Back to doctor tomorrow and worried he’s going to lower my dose !!!
So last time I was there I pushed for an increase to 75mg and he was ok with it but did mention not wanting to suppress my thyroid(not sure what he means ) but in the last 2 months I’ve actually self increased to 100mg as I felt crap still on 75mg ,I’ve definitely felt slightly better so do not want to reduce ! I’m dreading telling him I’ve gone up myself so any advice on if he starts talking about suppressing my thyroid? I’m going for full iron panel bloods too as my ferritin was only tested last time and it was low plus going to try push for the t3 to be done this time seeing as I asked last time and it still wasn’t done !and if I can’t get him to do it I’m going to get private bloods done myself because I really need that t3 result to take the next steps .im in Ireland has anyone gotten bloods done privately here ?
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curlymom
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100mcg is practically a starting dose, so I wouldn't worry too much. 100mcg is an average dose (if there's such a thing as average).
If you follow the advice on the forum for blood tests, you might find that you need another increase:-
1. The earliest possible blood test, fasting (you can drink water).
2. Allow 24 hours gap between last dose of hormones and test and take afterwards.
He should test B12, Vit D, iron, ferritin and folate.
Few doctors test T3, I think they only do TSH and T4.
I think I'd just ignore you've increased dose, although you'd run out of tablets, so I think I'd tell him you felt so awful you increased your dose.
I'd say that 100mcg isn't a large dose. If your TSH isn't 1 then ask for an increase as the aim if a TSH of 1 or lower - not 'in range' as many doctors seem to believe.
Ask him if he can test your Free T4 and Free T3 as both are more informative.
I don't understand a GP's logic that TSH ( which is generated in the pituitary gland in your head) is the most reliable indicator for knowing when to cut down on thyroid replacement.... which is what I expect he's on about.
Anyone with a hypothalamus or pituitary disorder, or anyone with lousy adrenal function, or CFS, or poor conversion will tell you that you have to go by symptoms and a full panel including t3 levels... Hopefully, someone will have some literature (written by respectable medical professionals) to back this up for you. You are definitely not alone in this.
Look at the thyroid pages on Dr Sarah Myhill's website. A large group of people with CFS / Fibromyalgia have quite suppressed pituitary function that effects thyroid and adrenals, so TSH is not solely relied on.
Every increase seems to involve a battle! Been there. Still there. But hopefully they are listening now. Or at least one doctor in the practice does seem to understand and may hopefully agree to an increase soon. I left it 3 months this time to be sure of having evidence.
Refuse to alter dose until you have had FULL Thyroid and vitamin testing
Just testing tsh and FT4 is completely inadequate
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
So good news after doctor this morning !! My doctor was on holiday and I saw a loccum who literally just ordered everything I wanted ,7 vials of blood taking and full spectrum of tests ordered and he wrote on the T3 that it was very important so if it’s not done this time It will be the labs problem to explain .he never questioned why I was at 100mg as opposed to 75mg as per my records I just said I was on 100 for last 2 mths and feel an increase to 125mg would be a good idea now and he just gave it to me for 3 months plus my loading dose of VitD ! So I literally skipped out of there hahaha it was like taking sweets from a child 😂🤣😂 now my own doctor next time I see him will probably go mental but that’s a fight for another day 😉
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Advice Please doctor going to reduce Levo, doctor is ring tomorrow.
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