Hypothyroidism Diagnosis: Not sure what to do at this point

Posted by rneedham1 @rneedham1, Jan 14, 2020

Hello. For reference I am a 27 y/o female. I recently had some blood tests done that showed my TSH levels at an 8.26 so my Dr. reordered the blood tests. I had the same tests done the next day as well as additional tests for T4 and T3 and everything showed normal the second time around with my TSH levels at a 4.12. I don't understand what would cause this fluctuation and additionally my doctor seems to think I am fine. However, I have been having the following symptoms for at least the past year and feel like they might be related to a thyroid issue. I don't know what to do at this point…My symptoms include:

-Shakiness, dizziness, sweating, weakness, light headedness whenever I start to feel hungry
-Severe lack of sex drive
-Overly emotional, feeling tearful, almost crying for no reason
-Feelings of being lost, hopelessness that seemingly come out of nowhere
-Brittle, breaking nails and hair breakage
-Feelings of anxiety
-Feeling cold often even when others feel warm or hot
-Decreased Appetite
-Mood swings, snapping at my SO
-Random loss of desire to do things I enjoy

I'm not sure what to do at this point. I am frustrated and I am tired of having these symptoms and being told I am fine.

Interested in more discussions like this? Go to the Diabetes & Endocrine System group.

@contentandwell

@w4cowboy I have mild hypothyroidism and also mild diabetes (no medications, A1c was 5.8 at last appointment). My PCP would be happy to manage those for me but I prefer seeing an endocrinologist. They have the most training in these conditions so know the most. I guess whether or not you see a specialist (endocrinologist) depends on how much confidence you have in your PCP. I just checked my last TSH results and they were 2.53 mIU/L, the range is 0.40 – 4.50 mIU/L so you are slightly above the range. I take a very small dose (25mcg) of levothyroxine daily.

@mri8191 Doctors are like that. When I saw my PCP in December he noted on the visit's notes that I was non-compliant because I mentioned a couple of things. This was despite my numbers being very good. Some doctors really do not understand that most people can go off the recommendations in a limited amount – keywords being limited amount. If you are not getting much exercise getting more could help for sure. If you are overweight and want to lose I highly recommend myfitnesspal.com. It really helped me to lose a lot of weight and I credit that loss with my diabetes being as controlled as it is.
JK

Jump to this post

@jk, Volunteer Mentor Thanks for the supportive words. When most of this started I was exercising a great deal. I used to play indoor soccer, completive volleyball 1 to 2 night per week, then Dancefit or jazzercise 1 to 2 nights per week. The doctor said my cholesterol was as good as an athletes. At that time, the reason for my weight gain by any provider was because my diet must have too many calories. However, I have never been a big eater or a binge eater. After my daughter was born, I would get exercise but just not in the Gym kind. I love gardening and would spend a great deal of time working in my yard. Of course chasing after a child and house work. As my child got older we would pick an activity to do together each year, like racquetball, off road bike riding, and ice skating. The interesting part is the more I worked in the yard the more I would gain weight which seemed very off to me ~ not sure with those other activities. Even water weight gain should come back off again rather easily but this weight did not. Many people told me it was probably muscle weight since that weighs more than fat but I read that muscle weight gain should only be about 10%. I was gaining more than that each summer. I have worked with dieticians and we make some minor adjustments here and there. It takes me a while but I will loose 10 pounds but eventually it will come back on again. I did try the 'Fit for Life' diet that utilized Medifast products. I did start loosing some weight but started having serious issues with constipation. They told me to keep drinking more water which I did but that did not stop the constipation issue. As this problem keeps progressing of course I keep loose energy to keep doing these things and I start to do less and less. Now I have a slipped disk that is pressing on my spine and for the last 2 years have been barely able to do anything in the yard or much house work. By this time though, the weight has already accumulated.

I did read some of these articles / authors that have been suggested in these comments ~ thank you to those that shares this information. I had already been taking a Kelp supplement per my sister's suggestion. However, from this information I have added a few more supplements like B1 & B2 & Ashwagandha. I am feeling a little less sluggish. Not where I would like to be but every little bit helps.

REPLY
@mri8191

@jk, Volunteer Mentor Thanks for the supportive words. When most of this started I was exercising a great deal. I used to play indoor soccer, completive volleyball 1 to 2 night per week, then Dancefit or jazzercise 1 to 2 nights per week. The doctor said my cholesterol was as good as an athletes. At that time, the reason for my weight gain by any provider was because my diet must have too many calories. However, I have never been a big eater or a binge eater. After my daughter was born, I would get exercise but just not in the Gym kind. I love gardening and would spend a great deal of time working in my yard. Of course chasing after a child and house work. As my child got older we would pick an activity to do together each year, like racquetball, off road bike riding, and ice skating. The interesting part is the more I worked in the yard the more I would gain weight which seemed very off to me ~ not sure with those other activities. Even water weight gain should come back off again rather easily but this weight did not. Many people told me it was probably muscle weight since that weighs more than fat but I read that muscle weight gain should only be about 10%. I was gaining more than that each summer. I have worked with dieticians and we make some minor adjustments here and there. It takes me a while but I will loose 10 pounds but eventually it will come back on again. I did try the 'Fit for Life' diet that utilized Medifast products. I did start loosing some weight but started having serious issues with constipation. They told me to keep drinking more water which I did but that did not stop the constipation issue. As this problem keeps progressing of course I keep loose energy to keep doing these things and I start to do less and less. Now I have a slipped disk that is pressing on my spine and for the last 2 years have been barely able to do anything in the yard or much house work. By this time though, the weight has already accumulated.

I did read some of these articles / authors that have been suggested in these comments ~ thank you to those that shares this information. I had already been taking a Kelp supplement per my sister's suggestion. However, from this information I have added a few more supplements like B1 & B2 & Ashwagandha. I am feeling a little less sluggish. Not where I would like to be but every little bit helps.

Jump to this post

@mri8191 Have you tried something like Miralax or Metamucil for your constipation problem? These seem to be the first things that doctors suggest. Here is a link to some of the things recommended for relief.
https://www.webmd.com/digestive-disorders/prescription-medications-to-treat-constipation#1
I lost a lot of weight prior to my liver transplant and had kept it off for quite a while but I have gained about 10 pounds since the summer and it too is being very stubborn. I am trying but maybe not hard enough. I am back to recording what I eat on MyFitnessPal, that helps to keep me honest. You can also put your exercise in there and they offset your calories with how much energy you expended.
At least you are feeling less sluggish, that's probably the first step to getting active once again. I too have been very sluggish recently. this morning was especially difficult. At this point I am wondering about SAD (Seasonal affective disorder) and wondering if the full spectrum lights might help.
I would really be interested in hearing how you are doing and if you are having good or any results from anything you are trying. I think there are many of us with similar problems.
JK

REPLY

Yes, I have tried Miralax and Metamucil and Citrucel. Those worked when I was younger (20s & 30s) but when I got into my late 40s those just make matters worse. The Smooth Move tea is now helpful and if that is not enough then I move on to use Healthforce Superfoods Intestinal Movement Formula or Irwin Naturals Daily Gentle Cleanse. I am no doctor and cannot say this would work for everybody but it works for me. I do know that one of the symptoms of Hypothyroidism is constipation and not having enough energy as well as hair loss. I am really feeling like that is the direction I need to concentrate on because without fixing that problem anything else will just be a Band-Aid without getting to the root of the problem. I really do feel I have spent too many years agreeing to the Band-Aid fixes. Would prefer to move forward with my PCP but if I cannot bring them on board to finding the root cause then I will have to work on my own. Hate to say that but I already feel I have lost way to many years.

REPLY
@mri8191

Yes, I have tried Miralax and Metamucil and Citrucel. Those worked when I was younger (20s & 30s) but when I got into my late 40s those just make matters worse. The Smooth Move tea is now helpful and if that is not enough then I move on to use Healthforce Superfoods Intestinal Movement Formula or Irwin Naturals Daily Gentle Cleanse. I am no doctor and cannot say this would work for everybody but it works for me. I do know that one of the symptoms of Hypothyroidism is constipation and not having enough energy as well as hair loss. I am really feeling like that is the direction I need to concentrate on because without fixing that problem anything else will just be a Band-Aid without getting to the root of the problem. I really do feel I have spent too many years agreeing to the Band-Aid fixes. Would prefer to move forward with my PCP but if I cannot bring them on board to finding the root cause then I will have to work on my own. Hate to say that but I already feel I have lost way to many years.

Jump to this post

@mri8191 have other tests been done besides the TSH? If not you should ask to have them done. The tests are explained here:
https://www.niddk.nih.gov/health-information/diagnostic-tests/thyroid
If I recall, you have gone to an endocrinologist. Maybe you need to find a better one. Sometimes symptoms tell more than tests. I just read that within the last few days in an article about osteoporosis. I know it was true when I had cirrhosis. I had many symptoms but my liver tests were not too far out of range so it was assumed it was not my liver. You definitely have some symptoms that sound like hypothyroidism.
JK

REPLY

No, they only do the TSH lab test. I have asked several time with a few different doctors for more (per my aunt's recommendation) but get critized by them for asking and made to feel like I do not know what I am talking about. Thanks for the link. I think I should print this out and take it with me to help with the discussion. With my supplements though, I think I better stop for a couple week before the lab test if they were to be ordered as to not skew the results. The very first endocrinologist I saw put me on meridian and that was helpful but I was told they will not keep me on this. Plus, this was taken off the market with thoughts it was causing heart valve issues. Then any endo I saw after that only wants to concentrate on my diet, then when I show them I eat pretty good and healthy, then they jump to the lack of exercise issue. I usually note the fact that I was recently on a research study that required me to ride a stationary bike for 12 weeks, for 5 days a week for 60 minutes while they monitored my heart rate to make sure it was maintained at a certain level. After the 12 weeks I gained over 10 pounds and no weight was ever lost in those 12 weeks.

REPLY
@mri8191

No, they only do the TSH lab test. I have asked several time with a few different doctors for more (per my aunt's recommendation) but get critized by them for asking and made to feel like I do not know what I am talking about. Thanks for the link. I think I should print this out and take it with me to help with the discussion. With my supplements though, I think I better stop for a couple week before the lab test if they were to be ordered as to not skew the results. The very first endocrinologist I saw put me on meridian and that was helpful but I was told they will not keep me on this. Plus, this was taken off the market with thoughts it was causing heart valve issues. Then any endo I saw after that only wants to concentrate on my diet, then when I show them I eat pretty good and healthy, then they jump to the lack of exercise issue. I usually note the fact that I was recently on a research study that required me to ride a stationary bike for 12 weeks, for 5 days a week for 60 minutes while they monitored my heart rate to make sure it was maintained at a certain level. After the 12 weeks I gained over 10 pounds and no weight was ever lost in those 12 weeks.

Jump to this post

@mri8191 If you take biotin stop taking it a few days before any TSH test, it can affect the results. My endo told me it does not affect your thyroid, just the test, and then only if they use a certain method for the test.
You must be in pretty decent shape. I can't go more than about 40 minutes on my recumbent bike, and about the same maximum on a treadmill or elliptical. It's amazing that you gained weight, assuming that your intake was the same.
JK

REPLY

Look at symptom of Parathyroid

REPLY

Hello @rneedham1

It has been a while since you last posted. I hope you have some relief from your symptoms. Will you post an update as you are comfortable doing so?

REPLY

These symptoms line right up with those I share with members of my Pernicious Anaemia (vitamin B-12 Deficiency) support group on Facebook. See if docs will do a vitamin deficiency panel. Such deficiencies are prevalent among sufferers of pituitary gland issues.

REPLY

Are you on blood thinner Xarelto? I had similar issues, then same thing happened with Thyroid medication. Higher the dosage the worse the side effects.

REPLY
Please sign in or register to post a reply.