Input please: Hi! I have been hypothyroid for... - Thyroid UK

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pansies7 profile image
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Hi! I have been hypothyroid for many years, and until recently I never had problems with my thyroid numbers, or with how I felt on the medication. I was taking a compounded T3/T4 for years, but then moved locations, and accessibility plus costs led me to change to NP Thyroid, which also seemed fine. I then tried Levothyroxine when I turned 65 and began medicare, unfortunately my new GP was not educated in thyroid testing and only checked TSH. Prior to this I had full thyroid panels run every year. Long story short, I was not feeling well for some time, and chose to have private testing done in December 2022 (also have a new GP), and my FT3 had dropped below range for the first time in all my years of testing. New GP added 5mg T3 to the Levo, and I retested 6 weeks later when my FT3 had risen slightly and now was barely in range, while TSH was suppressed (not a concern). FT4 had remained pretty much the same at 1.65, 1.26. I then switched back to NP Thyroid, because did not feel the Levo was right for me, and did not feel well while I was taking it. Beginning January 2023 my GP had me taking 60mg of NP Thyroid. Tested again in March, and my TSH .583, FT4 now below range at .76, FT3 2.93. My GP then increased my dosage to 90mg NP Thyroid 2 weeks ago. I used the % calculator I found on this site, and my FT3 was only 4% through the range, while my FT4 was a negative percentage. I am still not feeling well, which is beginning to concern me. The increase in dosage does not seem to be effecting me, other than the BUMP I felt the first few days of taking it. When I had private blood work done in beginning of December, I also had low sodium for the first time in my life, and liver and kidney numbers were a bit whonky, but normalized now. Except for the sodium. I am retesting this again tomorrow. I mention the low sodium because I have also had excessive urination (not a UTI) which I think may be part of the low sodium problem. I do not have Diabetes, and my B12, Ferritin, D3 and other B's are all good. I have been struggling with odd symptoms the last 2.5 years: Stiff, aching hands, wrists, forearms, and feet too. I do not have arthritis other than one or two mild spots that I do not notice. My energy has also been very low, and this is a struggle for me as I have always been very physical, I was a clinical massage therapist for 25 years and a Potter, neither of which I can do now. My blood work is negative for RA and a few other autoimmune diseases. I can't help but feel all of this is connected! I am wondering about a Pituitary, Hypothalamus problem, but I know these are quite rare problems. My testosterone is also extremely low. Sorry if this is too wide ranging a message, but I was hoping you wonderfully researched, and well read group might have some thoughts and insights for me. Thank you!

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SlowDragon profile image
SlowDragonAdministrator

It will take several months to recover once you are on correct dose NDT

Always test early morning and day before test take NDT as 2 or 3 doses split across the day. Last dose Approx 8-12 hours before test

Ft4 tends to be low on NDT

What vitamin supplements are you currently taking

What are your actual results and ranges for vitamin D, folate, B12 and ferritin

You may need to look at oestrogen and progesterone and testosterone levels too

pennyannie profile image
pennyannie

Hello Pansies and welcome to the forum :

It can take time for NDT to settle in the body and it's just a pity you switched to T4 monotherapy as this transition would have put your body through undue stress.

NDT is a slow build but once you reach a Free T3 reading that is optimal for you some of these other issues may well resolve.

No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - do you have any readings and ranges for these to share with forum members ?

Regenallotment profile image
Regenallotment

meanwhile your adrenals may have worked overtime to compensate for your low thyroid levels. I’ve been reading DrBarry Peatfield, he suggested adrenal supplements, there are others more experienced than me with this area who will hopefully comment 🌱

pansies7 profile image
pansies7

Thank you for responding! Yes, I am sad I tried the Levothyroxine too, I had never had any issues with thyroid medications over many years, so I think I was not expecting there to be an issue. Also trying to navigate medicare for the first time, which led to changes in doctors, etc. I had used the same compounding pharmacy for years, they shipped it to me after I moved, but they became very unreliable and every month I was on the phone trying to get my medication. This was the beginning of trying different approaches. My Ferritin, B12, D3 are all good, I have read the levels here, and checked my own, they are all good. In the past (many years ago now), I was able to stop thyroid medication for a few years, after I improved my adrenal health which was poor at the time due to other issues. So I am aware how closely linked the thyroid and adrenal glands are. What I am experiencing now is new to me, and not familiar. I will keep giving it time, hoping things will improve, but something is just not "clicking" in my body yet. I know that as we age our bodies tend to bounce back more slowly. I am pro-active, well researched and well read, as is my husband, which is why I enjoy reading this forum, I find this group to be up to date, and well informed! I have successfully healed my gut health (still in process as it can take a couple of years to reach full health), and am now able to eat many more foods than I was able to eat for years as I suffered from food intolerances. I have been working with 2 Nutritionists, and am very pleased with how balanced my diet is currently. I cured IMO (Intestinal methanogen overgrowth) and SIBO. I know that the health of the microbiome is the foundation for health throughout the body. I sleep very well now also, which I really cherish. So, I am a bit surprised that I am still struggling with thyroid health, while I do not expect this to correct immediately, I did expect to see ongoing improvements, even if they are slow in progress. Slow is fine. But it seems my thyroid hormones are still struggling. I have never had TH numbers fully out of range until 5 months ago, and my low FT4 in the last test in March was a surprise. As are the very small increases in FT3 since it dropped below range. How I feel does match the blood work! I retest in mid May, I will let you know what the results are. I have closely followed your tips for testing SlowDragon, and feel confident I will get correct test results. I did just get back my sodium blood test, and it is still sitting just below range, with only 1 point gained in 3 months. Odd. Thanks all!

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