I can't get my thyroxine dose right, can anyone give me advice?

[vector67]

I've had an under active thyroid (hashimotos) for 13 years and I was taking 100mcg of levothyroxine for all of that time until recently when my TSH went up, these were the results: TSH: 7 (0.27- 4.2) T4: 16 (12-22) My GP asked me to increase to 125mcg which I did and then we re-tested 6 weeks later and these were the results:

TSH: 0.30 (0.27- 4.2) T4: 24.2 (12- 22)

During that time I experienced muscle pain all over my body and muscle cramps at night, and felt slightly hotter than usual, however I can't say for sure if they were connected to this. I didn't have any symptoms when my TSH was 7.

My doctor wasn't bothered about the T4 being 24 and she wanted me to stay on 125. I decided to try taking 112.5 mcg by taking 100 and 125 on alternate days so it averages out. After doing that my TSH was still around 6, but I feel completely fine and my muscle symptoms went away. When I was on 100mcg my TSH was always at the upper end of the range. I dont know what to do and it's making me stressed. Thanks in advance.

[TiggerMe Ambassador]

It would be a good idea to get a full thyroid panel to see where your fT3 is, having a fT4 above range isn't ideal... also check your B12, Folate, Ferritin and Vit D levels perhaps you GP has done these and you can share the results?

Do you take any supplements? Muscle cramps can be down to low magnesium

[greygoose]

If all you ever have tested is the TSH and FT4, you only have half the story. You need FT3 and antibodies tested.

TSH is just a messenger from the pituitary to the thyroid, telling it when to make more thyroid hormone. It is the least important of the three readings.

T4 is basically a storage hormone that doesn't do much until it is converted into T3, the active hormone. FT3 is therefore the most important reading.

Antibodies will tell you if the cause of your hypothyroidism is autoimmune. And, if it is, you can expect levels to fluctuate independant of dose.

But, most important of all is how you feel.

That said, those jumps in levels were out of all proportion to the changes in dose. And 7 is very high for a TSH when the FT4 is over half-way through the range. So, one wonders about the accuracy of the tests. Do you always get your tests done in the same lab? Do you take biotin by any chance?

[McPammy]

When your TSH was 7 and your T4 was 16 at this point you needed your T3 checking also. With a T4 of 16 you’d have had enough T4 but likely you are not converting to the most important hormone T3. Then when your Dr increased your dose and you had cramping symptoms this indicates over medicated on T4 levothyroxine. So your Dr has increased T4 by too much. Personally I don’t think you need a T4 increase. But what you do need is another blood test to include TSH, T4 and T3. To then quickly assess - if T4 is high or adequate and T3 is low in the range then your not converting enough T4 to T3. Without T3 being optimal you’ll have all sorts of problems especially connected to energy and weight gain

This is what happened to myself. I was given combined treatment of levothyroxine plus liothyronine. Oh my goodness what a huge improvement.

If your GP won’t test T3 then do it privately and simply through Monitor My Health.

[HealthStarDust]

3 things are often cited on the forum.

1. TSH level is a poor marker of thyroid status, especially when on Levothyroxine

2. That TSH ought to be 2, or below when on Levothyroxine and most people feel well at around 1.

3. It takes anywhere between 6-8 weeks, up to 12 weeks for bloods levels and symptoms to stabilise.

You mentioned that your TSH is often at the upper end of the range, and you felt no symptoms on 100mcg. I wonder if it’s best just to go back to that? I do not think it’s wise to make a dose adjustment on just a TSH, let alone on just one TSH test result, preferring symptoms to guide me, as TSH varies from hour to hour as well as for all sorts of other reasons.

As greygoose has mentioned, your TSH and T4 levels are out of proportion to your dose changes and I too wonder about the accuracy of the tests and if you followed the protocol for testing as per forum suggestions?

I will caution in my experience that it can take a while for blood levels to stabilise, for example my T4 usually peaks at around 6 weeks then drops after a dose change. So how soon you test and how long you give a change in dose plays a part too. I would add yo-yoing on dose changes too quickly isn’t ideal either. That’s just a personal view based on experiences on other powerful medications and not based on scientific data on Levothyroxine as such. But, what is considered soon is any one’s guess.

Everyone is different which is why it’s important to go by how you feel, and using the numbers just as guide.

Good luck.

[jamesal0]

Vetcor. Good on you. TSH=4 is just a number, in a group of 10,000 people, there will be plenty that dont fit and are doing just fine. So long as you aren't 20 or something there is nothing wrong being 6. The main thing is you feel normal and don't have any bad symptoms like hair falling out. On Levo the best I can do is about 5. Any less than that and I feel horrible. I take NDT these days but that's another story.

[Bearo]

I’m not an expert but changing levels could be linked to having Hashimoto’s - levels can rise or fall on a temporary basis before settling again. For this reason it can be useful to try to resist the GP changing your dose, especially a reduction, in case they are reluctant to raise the dose again when needed. If you can keep your prescription on the highest dose offered you are free to take a bit less when you feel that’s what you need (by cutting tablets, skipping a dose or alternating doses - easier if you have a mix of doses to choose from - for example I’ve had my 100mcg prescription changed to 25mcg x 4)

[MarvelDC]

Hey Vector, little bit of advice from personal experience, make sure you take your medication at around the same time everyday, make sure you take it at least 30 mins before any food, other medications or drinks…. Always take it on its own with water to maximise absorption, this may seem obvious to some people and you may already be doing this, but you wouldn’t believe the amount of people who take there Levo the wrong way, I was one of them for along time, which meant my levels would fluctuate day to day depending if I’d ate food, drank caffeine or took other meds with them, it was only when I started taking it correctly I started feeling better and my levels where more consistent… you might already do this, but if not, start taking it properly then do another test in 8 weeks time to see what your levels are