I hope everyone is staying safe during these scary times.
I have a question regarding my current situation with hypothyroidism. I was diagnosed over a year ago, however, still don't feel good: constipation, weight gain, fatigue, hair loss, dry skin.
Was on Levothyroxine (75 Monday-thursday, 100 Friday-sunday).
Most recent blood test: TSH 0.52; T4 19.5
I have now been advised to take 75 Monday-friday and 100 weekends.
I have been doing some research and the general gist seems to be that GPs don't really test for FT3, rT3, or nutritional deficiencies. I tried mentioning it to my doctor and he just responded saying that if something was wrong he would be able to tell by the TSH level.
Does anyone have any advice on what to do next? I live in London and have been considering seeing a private endocrinologist. Recommendations?
I know now is a very inconvenient time for this but I've been feeling quite frustrated and sad. I don't feel I'm being heard and it is so unfortunate that many of us go through this for years without receiving the proper help.
Thank you in advance!
Fran
Written by
francesca001
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Do you have reference ranges for your results, these vary from lab to lab so we need them to interpret your results. However, we can tell that your TSH is actually in a pretty good place, where most hypo patients do feel best.
Your FT4, we can't say until we see the reference range, but I assume it's fairly high in range. If so, the fact that you still have symptoms, suggests that your FT3 may be low, and it's low T3 that causes symptoms.
High FT4 and low FT3 means that your conversion of T4 to T3 is poor. This can be due to poor nutrient levels so we always advise to test these before doing anything else. You need to test
Vit D
B12
Folate
Ferritin
and if levels are low or deficient then they will need supplementing to optimise them.
I would hang fire on seeing a private endocrinologist. Get all testing done first and post results on the forum, you may get all the information you need here without the expense of seeing a private endo. Seeing a private endo doesn't guarantee that they will have any different ideas from an NHS endo or doctor.
You can get a full thyroid and vitamin panel, which includes the FT3 test which your GP seems to have totally disregarded, and all the nutrient tests listed above.
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test:
Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
Both companies offer fingerprick version or venous blood draw at extra cost.
If you order the Medichecks test you can use code FP25 for 25% off the fingerprick version, this offer ends at midnight on 29th March, then you will be able to use the 10% code mentioned above.
Post results, plus reference ranges, on the forum for members to comment.
My experience is that if you can get referred to an Endocrinologist that would be a start. They will do further tests then prescribe whatever you’re deficient in. I did just meet one who was looking at me more holistically and systematically and he’s finally concerned at my constantly low albumin etc and is wanting to look at protein loss and absorption issues, and then the corona virus struck and I’ve been unable to get my results. Dunno if you’d be luckier with private docs.
SeasideSusie is right. There are many so called experts that aren’t! Thyroid Uk have a list of good ones but it can be very much a post code lottery plus we usually end up playing privately , getting an NHS one isn’t easy but a private one, a good one, may eventually see you on the NHS.
I have not seen a private endocrinologist myself, but a friend of mine did and she was very disappointed….whereas her GP tested her TSH and FT4, the endo would only test her TSH, claiming that´s all that´s needed for proper treatment of hypothyroidism. In the end, she ended up feeling worse because the endo lowered her levo dose which so far had kept her TSH low-normal (below 1). He said she was borderline hyperthyroid based on that...
I´m not saying all endos are like that, but many of them seem to go only by the TSH and may not even necessarily test FT4, let alone FT3 or rT3. Unfortunately, many endos seem to specialise in diabetes or adrenal disease and know very little about thyroid disease. To them, you should feel fine on levo and a normal TSH, and if you don´t it´s not related to your thyroid.
To sum up, I would not waste money on a private endo unless a member could recommend a really good one based on her own experience.
Just out of curiosity: why do you take 75 mcg on Mo-Th and then 100 on Fr-Sun? I know some people on doses not available such as 88 mcg will take 75 and 100 mcg on alternate days rather than splitting pills, but I have never heard of anyone taking thyroid meds the way you do...how did your doctor come up with that idea?
I’m not an expert and cant give recommendations about endocrinologists in London. However I can share what I have done to improve my absorption of my medication which has led to me feeling better and reduce my dosage from 100mg to 75mg per day. I started taking meds two hours before breakfast as I generally have porridge with milk, and according to research calcium blocks absorption! My GP also prescribed me vitamin D and calcium combined. In the small print it says you need to take vitamins like this at least 4 hours after taking levothyroxine as can stop absorption and recommends taking it with evening meal. GPs don’t tell you any of this, which to my mind neglects duty of Care! I told my GP how I manage my medication and she raised her eyebrow and said 20 minutes prior to eating would be fine - despite me telling her in my experience and according to medication instructions it really wasn’t!!!!!!
A Dr that doses by TSH Only is a Dr you want to run from . This Dr does Not understand thyroid dosing . Look for another Dr that *listens* does not dose by TSH Only . But understands FT3 FT4 and can help you feel your optimal . You need to know your nutrient levels too since the are part of the components that help with our thyroid meds work better for us .
Vitamin "D"/K2, B-12/folate , Iron/ferritin. In addition you need to take vitamin "C" , magnesium, Celtic Sea Salt for adrenal/Cortisol /electrolytes.
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