My previous Endo (private) retired last October and the new one (private) that I was suggested to see immediately reduced my Lio from 100 to 75 & the T3 from 20 to 10. Originally I had wanted to see an NHS Endo 3 years ago but none were available, hence the private route.
My readings are T4 18.8 - T3 5.1 - TSH 0.03 - Vit D 23 - Vit B 278. My latest blood test says the TSH is chronically low because I have an 'Empty Sella' and is therefore 'normal'!
I am currently taking per day Thyroxine 75, Liothyronine 10, B12 100 & Vit D 4000.
I sleep all night & if allowed all afternoon & evening time. I have no energy and feel totally fatigued, my hair is coming out and have lost nearly 2 stone in weight. My voice has been affected and I have a sore throat. By the way I am 85!
My present Endo is of little help and seems only interested in keeping my results ' within range' irrespective of how I actually feel - is life worth carrying on??
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LONGEATON
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On reviewing my initial report I have made a slight error and apologise. My T4 back in February 2020 was alternate days of 75 &100 & T3 20; on checking back I find my previous Endo at some time reduced the T4 to 50 which my current Endo increased on 19th October 2023 to 75 but halved my T4 to 10 per day with his intensions to stop prescribing liothyronine.
All blood tests including T3,T4 &TSH were taken at my GP's clinic before 9am & T4 stopped 24 hrs before being processed at Medway hospital
Before reduction my Ft3 was 4.9 - Ft4 10.40 - TSH 0.05(previous 0.32 in March 2023)
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Remember over medication can feel very similar to under medication. Looking at your TSH being so low this indicates you are taking too much thyroxine. It could be the levothyroxine or liothyronine or both.
With you losing so much weight and hair falling out. You definitely sound as though you are taking too much thyroid medications.
TSH is always suppressed with T3 supplement. The pituitary is releasing less Thyroid Stimulating Hormone (TSH) because it's being supplied by replacement hormone. Above normal T3 has been shown to be a cause for osteoporosis because it disrupts bone modeling, just as too low T3 can cause brittle outer bone. Low TSH only affects bone modeling if it's caused by HIGH FT3, not normal FT3.
Not all people taking T3 liothyronine have a suppressed TSH. Mine is in range, just and always is. I take Thybon Henning 5mcg twice a day plus my levothyroxine also.
The point being that T3 is the main driver of TSH.. it is more sensitive to changes in FT3 than FT4. The higher your FT3, the lower TSH. By suppressed, I'm saying that it is lower than it would be taking T4 formulations only. And in range is below 1. Because of T3 sensitivity, the pituitary releases less Thyroid Stimulating Hormone due to higher levels of T3. If levels are optimum, it does cause a lower TSH than normal for many. I've taken Armour for 24 years. When my levels are optimal, my TSH is below normal. The only time osteoporosis is a risk is if FT3 is above normal. Studies were based on TSH suppression caused by too much T3 causing bone modeling issues.
My latest TSH result last week was 1.09 (0.35-5.50). My T3 result was 5.6 (3.7-6.00) 83%. And my T4 was 9.6 (7.86-14.41) 24%. So from what you’re saying if I understood correctly with my quite high T3 my TSH should be suppressed ( lower than bottom of range 0.35).
I did my bloods with taking t3 morning dose 2 hrs previous. I hadn’t taken t4 levo dose for 16hrs. I don’t change my regular timings for my 9am blood draw.
I did have a couple of months of Erfa prior to changing to levo plus liothyronine. If I remember correctly my t4 was always very low.
Maybe my individual situation is down to my very low level of t4 to t3 conversion. Prior when I was just taking t4 levo my t3 was only 8%. So I’m starting from a very low point with t3. Maybe that’s part of the reason it doesn’t go over its level on my dose. Another maybe that I take liquid levothyroxine. I split both levothyroxine and liothyronine doses twice a day. So that would also reduce spikes and therefore reduce the chance of TSH alarming suppression.
We are all individuals and have to find our own ways to feel better and energised. I’m symptom free now and have been for 5 years since managing to get my levels right for me. As long as my medications are not changed and continuous supply I really have no issues.
T3 formulations taken within 2 hrs of previous dose raises FT3 levels and lowers TSH within 2 hours after dose and peaks at 5 hrs. It gradually reduces FT3 after 13 hrs and raises TSH to baseline within 24 hrs.back to baseline. Your FT3 would be artificially higher and TSH artificially lower than what they would be, had they been taken at least 13 hrs after last dose. Similar effect as taking biotin within 7 days of labs, due to lab interference. As long as you always follow the same routine when testing, it shouldn't matter, as long as you feel well. But if you weren't feeling well and had labs taken under those conditions, it would be difficult for your Dr to determine that you may need an increase. I am not saying that everyone is the same, but the facts remain that TSH is T3 sensitive. T3, the active hormone, is felt within 2 hours after taking (I can feel mine within an hour), unlike T4, which is the inactive hormone, that is subtle and takes up to a week to fully absorb. It's the reason many split their T3 dose and take it twice a day...less immediate side effects, and improves mid day drop in energy and brain fog. It's why it is usually better to wait until after labs before taking replacement hormones that contain T3, and at least 13 hrs after last dose.
I alternate my bloods every 3 months. I take or not take before blood draw. My TSH doesn’t alter. ( well just a very tiny smidge). The only thing that alters is the T3 or T4 levels.
Your B12 is in it boots nowonder you are losing weight and have hair falling out. I suggest you post on PA forum. You may need injections as oral supplements arent helping much.
Presumably your hypothyroidism is secondary due to your pituitary issues and therefore any TSH results are irrelevant. Your FT4 level need to be in the upper third of the reference range. Are all your other pituitary hormones correct. Have you been tested for Growth Hormone deficiency? It may not be one hormone issue causing your symptoms it might be 2 or 3 that aren't optimised. Pituitary patients struggle with getting everything balanced especially if you only see a consultant every six months.
Has your Endo considered D3 prescription? My sister takes 50,000 D3 weekly. Also, B12 is available with injection, to give you an immediate boost. Consider adding Vit K2 to your Vit D3 to better regulate calcium, directing calcium to your bones and teeth and, hopefully, away from your arteries, preventing calcification of arteries. I'm sorry you are going through so many changes. When taking T3, the main concern is FT3 and FT4. That is what should guide dosing. Your low TSH is only concerning if your FT3 is above range.
Hair loss may be attributed to deficiencies in iron, biotin, and protein, which are common among peoples with Hashimoto's thyroiditis (and possibly other thyroid conditions). This was the case for me. Fatigue and tiredness could also be linked to adrenal fatigue.
If you're still experiencing symptoms despite being on medication and having normal-range test results (well, hopefully the diagnosis of Empty Sella was accurate), it might be because the underlying issues that initially caused your thyroid problems remain untreated.
I personally found great help in books by Izabella Wentz. They provide valuable insights into understanding the various factors contributing to thyroid problems.
Hope this helps, and you'll find the reason for your symptoms, feeling better soon! 🙂
Honestly your B12 is shocking low. Ask your GP to do a blood test for Intrinsic Factor. This is the test they use to pick up Pernicious Anemia. Do this before supplementing. Unfirtunately this nlood test only picks up 50%of cases....so a negative is not proof that tou dint have it but a positive is definate proof you do. Its possible at that level you may need b12 injections. Do you have meat in your diet. That's the main source of b12. As we age we find it harder to absorb12 from our tummies as the stomach acidic level reduces..... So supplementing is what is advised for anyone over 50yrs.
Whilst your GP is testing B12 get them to check your iron and folate level.
Have a look on B12d.org. they have a great assessesment tool checking for symptoms and give great advice.
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