Hi, I found out I have hypothyroidism a few months ago from blood tests as I am having problems trying to conceive. TSH was 5.5, re-tested 2 months later and was still TSH so doctor started me on 25Mg levothyroxine to try and get my levels down as told I need these below 2 for healthy pregnancy, been on this for 2 months and just had another blood test, was hoping they would of gone down to atleast 3 but instead they have shot up to 17.8! Doctor is now saying to double my dosage to 50mg but I am worried Incase the thyroxine is making me worse as my TSH levels did not rise when I wasn’t on any medication. Any advise? Could I be having a bad reaction to the meds?
TSH levels risen since being on levothyroxine - Thyroid UK
TSH levels risen since being on levothyroxine
It is likely you are in the early stages of hypothyroidism and your thyroid is progressively failing. In which case you would need increasing doses until your thyroid packs in and you are on a full replacement dose.
Standard starter dose is 50mcg of Levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH under one) and FT4 is in top third of range and FT3 at least half way in range
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely 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
thyroiduk.org.uk/tuk/testin...
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
Medichecks currently have an offer on until end of May - 20% off
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
nhs.uk/medicines/levothyrox...
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and 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
NICE guidelines
cks.nice.org.uk/hypothyroid...
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
The probable reason your TSH went up on a small dose of T4 is as follows. If you have a failing thyroid, it tries desperately to keep your FT3 level (the active hormone) as normal as possible even though the supply of T4 from it is falling. It does this by increasing T4-T3 conversion in the gland to compensate for the falling T4-T3 conversion in the rest of your body. It is very good at this compensation and if a lot of the thyroid is lost can actually make more T3 than the body does. When you take a low dose of T4 you are interfering with this thyroid T3-saving activity and the body isn't making up for it. The result will be that your T3 production will fall, you will feel worse than with no T4 and TSH will rise. You need at least 50 ug T4 to overcome this problem. Very low dose treatment with T4 is counterproductive, specially if you have a lower level of hypothyroidism not yet fully happening as in overt disease.
I'd agree with others, 25mcg is a super low dose, and does more harm than good.
5.5 is actually a pretty substantial TSH, and shows you have thyroid illness and will need thyroid hormone replacement for life, probably Hashimotos autoimmune thyroid disease. There is a small chance of other forms of thyroid illness, though, so it would be useful to see a full thyroid panel, which consists of TSH, freeT4, freeT3, and antibodies: Thyroglobulin antibody and Thyroid peroxidase antibody. Your doctor may not agree to all that, its possible to get private finger prick mail order blood tests from Medichecks or Bluehorizon.
Unfortunately it is a slow process to get on the right dose, and it's very common to feel worse before feeling better. In general I'd say it takes about 3-6 months even if a person is lucky and gets on the right track straight away. You were started on an extra low dose, so you've already added one extra iteration to that. 50mcg is still a pretty low dose, if a TSH of 17.8 is a good representation of your thyroid situation, it will take you a few increases to get well. Best practice is to stick on a dose and have a blood test every 6 weeks, and adjust dose based on that. With the NHS you will often wait a bit longer.
It is good news to have caught this now, though. Being hypothyroid is a danger to a pregnancy, and some of the saddest stories we hear on the forum are people who have had many miscarriages before they are diagnosed.