TSH is rising and GP is just so slow to react

[Donutlight]

Hi everyone. I'm new. I have been reading for a few weeks and this is all very interesting and makes me think I have to be much more pro active for my own health. I was diagnosed with Hashi in 2018. My TPO was 1300 so pretty clear. My gp gave me 25mg of Levo and left it at that. No real follow up and the symptoms built up - my eyebrows have disappeared on the sides, terrible migraines, weight gain, etc. I went gluten free and the migraines have dropped by about 80%.

In August last year:

TSH 1.87 (0.25-5), FT4 13.7 (9-23), FT3 3.8 (3.5-6.5)

The gp was happy to leave me on 25mg but I got an Endo to check it and he said "there was scope to increase thyroxine to 50mcg till FT3 is slightly higher". Only then did I get an increase. My symptoms are getting worse, so before my blood test last week (9am, no food or drink) I stopped the Levo for a week beforehand - and didn't notice a difference.

Results are:

TSH: 3.68 (0.23-5), FT4 15.2 (9-23%), FT3 4.1 (3.5-6.5)

Yes, I feel terrible. I wonder if stopping the Levo for a week made the TSH rise that much, or it was on the way up anyway. No one from the GP surgery was going to call me about the results - I called the blood line first and was simply told the result was "raised, no need to repeat". I insisted on the results and a GP consult on the phone when I was told the figures (had to ask for the ranges as well). I asked for an increase in Levo and he said he would "speak to the relevant parties" (I thought that was me!). First I was told they would have to take consultant advice before going to 75mg, but they called back and said I could go to 75mg and test again in 3 months. I got the impression the 75mg was just a temporary measure and would revert to a lower amount when results were better. They also tested the TPO, which is still at 1300. I had to fight to get the increase, saying things like "the corect dose is one that restores good health" and "most thyroid patients do best with a TSH under 1" - so reading the posts came in useful, thank you! Going forward, I just want to feel better as soon as possible, and don't see why I should wait 3 months to retest - and if they do retest and the TSH is lower, they might take the extra Levo away! Could take ages to get to the right level of Levo.

I now take 4000 D3, Magnesium (K2 in the post), collagen, and B12 test from medicheck on Monday arranged as I had been taking B12 supplement and stopped a week ago. On HRT patches too.

Thanks for any advice!

[humanbean]

As ammunition for the future, this link might be helpful :

healthunlocked.com/thyroidu...

[Donutlight in reply to humanbean]

Thank you!

[SlowDragon Ambassador]

Good grief...both GP and endo sound hopeless

How long have you been on 75mcg levothyroxine?

Do you always get same brand of levothyroxine?

Which brand?

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 significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

For full Thyroid evaluation you need TSH, FT4 and FT3 plus EXTREMELY important to regularly test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common with Hashimoto’s

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Have you had coeliac blood test yet?

Come back with new post once you get results of new test

[Donutlight in reply to SlowDragon]

Hi, Started 75mg today, after the phone call yesterday. Before that I was on 50mg for 9 months. The brand is NorthStar. I felt better going from 25mg to 50mg so hopefully going to 75mg will make a difference. They are useless..

[SeasideSusie Remembering in reply to Donutlight]

Donutlight

Started 75mg today, after the phone call yesterday. Before that I was on 50mg for 9 months. The brand is NorthStar.

Are you taking 1 x 75mcg tablet or 1 x 50mcg plus 1 x 25mcg?

[Donutlight in reply to SeasideSusie]

Haven't picked ip the extra perscription for 25mg yet, so just breaking a 50mg in half til Monday.

[SeasideSusie Remembering in reply to Donutlight]

Donutlight

OK, just so that you are aware, if your 25mcg tablets are Teva or Northstar (whose 25mcg tablets are made by Teva) then many people don't get on with Teva brand. Some do but some have adverse reactions.

[Donutlight in reply to SeasideSusie]

Oh, so the 50mg are not Teva, but the 25mg will be? I don't think it's a good idea to mix brands.. I guess I could ask for 75mg tablets.

[cjrsquared in reply to Donutlight]

The only company that make 75mcg tablets is teva! Lots of people alternate doses so for 75mcg, 50 mcg one day and 100mcg the next. It can be challenging to remember what you took the day before, but worth considering as not all manufacturers make 25mcg tablets.

[SeasideSusie Remembering in reply to Donutlight]

Donutlight

Oh, so the 50mg are not Teva, but the 25mg will be?

No, that's not what I said.

You said:

Started 75mg today, after the phone call yesterday. Before that I was on 50mg for 9 months. The brand is NorthStar.

So you named the brand Northstar. You didn't say which tablets were Northstar so I presumed your 50mcg ones are when you said you haven't yet picked up the prescription for the 25mcg ones.

I then said that Northstar 25mcg is made by Teva so if your 25mcg tablets are Northstar or Teva then some people have adverse reactions to that particular brand.

The only brand to make 75mcg tablets are Teva.

If you get Teva or Northstar 25mcg tablets you may or may not want to give them a try, that's up to you.

There are two other makers of 25mcg tablets - Wockhardt and Mercury Pharma - you could just as easily be given either of those. I was just cautioning you that Teva is a problem for some people, as is 25mcg Northstar because it's made by Teva.

[Donutlight in reply to SeasideSusie]

Oh, thank you, I'll check on Monday when I pick up!

[SlowDragon Ambassador in reply to Donutlight]

Sorry missed your point that you are already on strictly gluten free diet, so no point getting coeliac blood test

Yes gluten free diet helps thousands of people with autoimmune diseases