Muscle weakness

[Highland49]

I have hashimoto's, triggered by a virus which has left me with the usual symptoms, including muscle weakness. Has anyone found either a remedy or medication to help this symptom? I can function on a daily basis but tire very easily with extra activity. I don't have much strength in my muscles.

I take levo 75mcg daily and 10mcg liothyronine daily, plus I self inject b12 twice weekly and take D3/K2/magnesium glycinate daily. Vitamin E tablets have helped a bit with the muscle weakness but it's still limited as to what I can do on a daily basis and I've just got used to physically not doing much, and changed my job as a result.

My latest blood results (blood draw before my medication)

TSH 0.5 (0.27-4.2)

FT3 4.15 (3.1-6.8)

FT4 15.6 (12-22)

TPO antibodies 121 , were nearly 400 when diagnosed a few years ago.

Any information and advice would be greatly appreciated 😊

[Lalatoot]

For me the Ft3 is not high enough yet. Over 5.5 would be where I would be aiming.It took me 15 months of altering doses of levo and lio individually before I found levels I felt right at. I have now been on a stable dose for 3 months and am beginning to build up my stamina slowly.

Adding lio is not often a quick fix. You need to find levels that feel right for you and then give your body time to recover.

[JGBH in reply to Lalatoot]

Out of interest what levels levothyroxine and liothyronine do you take now? I know it varies for everyone.

[Lalatoot in reply to JGBH]

Was on 100mcg levo. Endo prescribed 50mcg levo and 20mcg lio. Worked my way to that. Now on 100 mcg levo and 10mcg lio. Currently my FT3 is higher than it was on 20mcg lio.

[JGBH in reply to Lalatoot]

Many thanks. Pleased you’ve found your correct doses.Am on 75 mc levo and was on 25 mc lio, but on 20 since I had shingles (still not finished) on 1 January. I have many other health issues but I have been losing hair rather a lot again...

Keep safe.

[Highland49 in reply to Lalatoot]

Thanks Lalatoot, I was quite surprised when the levels were lower. I remember reading on here before that around 5 for FT3 and 19 for FT4 is ideal. But I have a possible problem with increasing my dose, which I'll explain in my reply to SlowDragon!

[SlowDragon Administrator]

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Last 5mcg T3 roughly 8-12 hours before test?

Do you split 10mcg T3 into 2 x 5mcg approx 12 hours apart

When were vitamin D, folate and ferritin levels last tested

Are you on strictly gluten free diet or dairy free diet?

Ft4 is only 36% through range

Ft3 is less at only 18% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Many of us on levothyroxine plus T3 find we need both Ft4 and Ft3 at good levels. Often at least 60% through range

Suggest you increase levothyroxine to 75mcg and 100mcg alternate days and retest in 6-8 weeks

Likely to need to increase T3 by 5mcg.

But we only increase one or the other ......never both together

Do you always get same brand levothyroxine at each prescription

Which brand

Same question for T3

[Highland49 in reply to SlowDragon]

Thank you SlowDragon. I tested early morning, after just water. In the past I was splitting the T3 dose but luckily found it made no difference taking all 10mcg in the morning, so I would have been "clear" of both medications when testing.

I'm on Teva for thyroxine and Morningside for T3.

I'm strictly gluten free, have been for a few years now but have very small amounts of dairy throughout the week.

Vitamin D was last tested Feb last year and was slightly over range at 178nmol (50-175). I take 10,000 iu daily in a soft gel form (Doctor's Best).

Folate and ferritin haven't been checked for over 2 years but folate always above range.

I have a possible problem with having my doses increased - although I'm on repeat prescription through my GP of both medications, I was being monitored by a private endocrinologist. He always insists on me taking my medication before I take my blood test. When I was previously tested (Feb 2020), FT3 was over range at 8.58 and FT4 at 20.2 as a result. That morning, medication had been taken an hour before but with no food at that point. He is adamant that his guidance of taking medication first is the right way.

Due to financial difficulties, I haven't had any more consultations with him, I would have been due to return the end of last year.

A possible scenario (if I returned to him) is that he asks me to retest after my medication. He was happy with my previous results and hasn't seen these recent results.

I guess the only thing I can now do is go back to my GP to be referred to a NHS endocrinologist, one who is knowledgable of hashimoto's. The endocrinologist before my current one dismissed my raised TPO antibodies and said I needed HRT, which further "blocked" my thyroid hormones and made the breathing problem worse.

So, possibly I'm back to the drawing board or I return to my functional doctor but that is expensive too. She mentioned NDT as a possibility in the past but was concerned that I was over medicated after the Feb 2020 result!

Also, I'm not sure if I started seeing someone else, would I be able to be prescribed through the NHS, like I am with the T3 currently? (I have the DIO2 gene defect). I think I had resigned myself to being grateful that I was receiving some medication to get back to some health.

[SlowDragon Administrator in reply to Highland49]

So you don’t want to go back to that endocrinologist.

luckily found it made no difference taking all 10mcg in the morning, so I would have been "clear" of both medications when testing.

I'm on Teva for thyroxine and Morningside for T3.

It might not appear to make any difference wether you split T3 to you, but it gives much smoother T3 levels and is likely to be necessary

And it’s ALWAYS essential to split dose day before blood tests. Last 1/3rd of daily dose T3 8-12 hours before test

With Dio2 gene variation you will need to split dose....likely to need 3 doses per day. This endures brain always has some T3 available

If you are dairy free you need Teva T3

[Highland49 in reply to SlowDragon]

Regarding needing a higher dose, I feel like I'm between a rock and a hard place. If I contact my GP about any of this, I run the risk of T3 being discontinued (but this would go against guidelines) and if I go against the advice of my endocrinologist, I could be barred from seeing him.

At least I seem to tolerate a small amount of dairy, so I'm not too worried about asking for Teva T3.

Thank you about the explanation of splitting my T3 doses. I definitely need to consider this. The only problem is that I eat so frequently and was finding it difficult to allow 2 hours after eating before I took my second dose, and then needing another hour after the dose before eating again. One of my worst ongoing symptoms, that I've always had, is feeling weak, lose concentration and then irritable if I don't eat.

If only hypothyroidism could be managed as easily as other conditions.....

[Ilander]

I agree with SlowDragon. Your symptoms along with relatively low FT4 an FT3 levels indicate that you are under medicated. Raising your dosage will most likely suppress TSH but this does not mean hyperthyroidism and need a dose reduction. TSH is useless as a diagnostic when already taking thyroid med. Symptom relief is the objective.

Everyone can have different levels of FT4 and FT3 at which they feel normal, so there cannot be any firm targets for FT4 and FT3. Your dosage must be enough to relieve hypo symptoms, without going so far as to create hyper symptoms. And it is important to note that symptom change lag behind changes in levels, so you have ot be patient after a dose change.

For best results Vitamin D should be at least 50 ng/ml, B12 in the upper part of its range, and ferritin should be at least 100. If you want to read more about this go to the home page and read "Managing the Total Thyroid Process".

[Highland49 in reply to Ilander]

Thanks llander. I last had my vitamin D checked Feb last year. Was slightly over range at 178nmol (50-175). The functional doctor that I was seeing said to come off the D3 for two weeks, then retest. I know from my symptoms if I stop or reduce my D3, my air hunger returns, so I stopped seeing the functional doctor. I haven't had my ferritin checked for some time. When last checked over a year ago, it was 90. I take folate on my b12 injection days.

Many thanks about the "Managing the total thyroid process".

[Nessynu]

Hi Highland49. Did you ever get to the bottom of your weakness? I'm going through the same thing currently. Very weak arms and legs and no stamina at all.

[Highland49 in reply to Nessynu]

Hi Nessynu,Sadly, I never did. I'm ok with light housework and can walk a fair distance but would so love to do more.

[Nessynu in reply to Highland49]

Thanks for replying. Its so frustrating this condition. Hopefully we will get some answers eventually!

[Highland49 in reply to Nessynu]

I so hope so for both of us. In some ways, it's worse than the fatigue.