Fed up - painful, aching muscles, stiffness and swollen ankles, tiring easily, palpitations

[MiniMum97]

Hi

Would appreciate some advice. I was diagnosed last May - since Aug last year have been on 100mcg levo. In Oct, GP decided results were OK and refused an increase despite residual symptoms (lots of symptoms had gone/were much better). GP felt that my TSH should not go any lower as it's already below range, and that symptoms could dissipate as they sometimes took time to resolve. Having read on here that this "symptoms can lag behind blood results by months" I thought this was not an unreasonable approach. My results at this time were TSH 0.14 (0.27-4.2) and T4 17.5 (12-22) GP said to come back in 6 months for a retest if symptoms were still present.

We are about 4 months on and symptoms are not getting any better. I have painful aching, stiff muscles all the time - the pain gets better and worse but had a bad day today and I was in pain everywhere. This is despite me doing stretching yoga most days, and getting massages from my husband, plus I do some physio stretches for my ankles. I have swollen ankles - a non-pitting edema which won't go, and get worse when my muscles are bad. I've been to the musculosketal clinic about them and they identified that I have tendinopathy in my achilles, which they think is the cause (having looked it up it doesn't look like it to me - swelling is in the wrong place). The tedinopathy is odd though as there is no normal "cause", I certainly haven't been exercising because I haven't been able to for a long time, and I have no injury - the tendinopathy is also in both ankles. I think I have started to also get tendinopathy in my elbow too.

Although my fatigue is much better I still tire easily, and can't really exercise - this hasn't got any better since Oct.

Then in Dec I started getting palpitations and breathlessness and ended up in A&E on NYE because they were so bad. They've calmed down a lot but haven't gone completely. Can I just say that I have had palpitations on and off for many years, that worsened when my hypo symptoms started; however, these have been nothing like I've had in the last few weeks. I can't sleep on my left side still because it sounds like my heart is pounding through the mattress! My heart rate is fast and I am getting lots of heart rate notifications from my apple watch when it goes over 100 when resting - which is about 5 times a day.

Do you think I might benefit from a dose increase (I've list my full last set of bloods below)? Or could my palpitations mean I need a decrease? Or am I being impatient? Feel v worried that if this isn't my thyroid it could be fibro (I have tender points where i can't be touched).

Thank you!

Medichecks results:

TSH – 0.15 (0.27-4.2) [Last test: 1.09]

Free thyroxine 17.1 (12-22) [15.5]

Total thyroxine 102.0 (59-154) [89.5]

Free T3 4.67 (3.10-6.8) [4.39]

Antibodies still negative – about 6th test now.

No serum B12 done.

Folate – 7.88 (2.91-50) [7.39]

Vit D 75.5 (50-200) [68.9]

CRP 3.4 (0-5) [1]

Ferritin 31.6 (13-150) [31.7]

[Mary-intussuception]

I think you need B12 test asap. Could also ask GP for Kidney bloods and Full Blood Count? Have you considered asking about Lymphoedema? Think it would be in limbs also - not sure. Look on LSN forum on here. And Google search " pictures of leg Lympthoedema' Also find out if there is a Lympthoedema Clinic /Service near you and phone and ask how you go about getting a referal.

[Mary-intussuception in reply to Mary-intussuception]

Please excuse typo!

[MiniMum97 in reply to Mary-intussuception]

Hi Thanks for your reply. It’s not lymphodema. B12 was ok when tested the time before. I can’t recall what it was but I’ve continue supplementing as suggested on here last time. I don’t think b12 is the issue. Don’t worry about typos !! 😊

[Mary-intussuception in reply to MiniMum97]

Did you have a Lymphangiogram?

It seems like some joint / foot thing doesn't it? Wonder what?

[Saggyuk]

Hi there - my legs used to hurt dreadfully and were always swollen.

I don't think an increase in thyroid meds will help to be honest and it's likely due to something else. I can see you've already had good advice on your vitamin levels.

Do you have a varied diet or likely to be low in other things not tested too? Do you eat enough? Do you drink enough water or too much?

You could always check your electrolytes and see if any imbalances there as can cause fluid retention etc - bone profile test and kidney function test - always useful to do a liver function test alongside. Also check your blood sugar levels.

If nothing showing up there, then the only other thing I can suggest is a gluten free diet. I thought I didn't have ankles for 30+ years until I gave up gluten lol. All the pains and swellings in my legs and all over my body disappeared as it seemed to be having a systemic inflammatory affect pretty much everywhere.

Not sure what to say about the palpitations and heart rate. Mine was around 110 all my life until I sorted some other issues out. Always had low blood pressure too - apparently to compensate. IF it's not iron or B12 deficiency etc, I don't know but electrolyte imbalance can also cause this so well worth checking out.

Hope you feel better soon

[Saggyuk in reply to Saggyuk]

Here's a quick link for some easy quick info on electrolyte imbalances:

draxe.com/electrolyte-imbal...

[MiniMum97 in reply to Saggyuk]

Why do you think it's not my thyroid meds that need adjusting?

My electrolytes were tested by the hospital and were OK. Although I am taking biotin and wasn't able to stop prior to the test as it was unexpected - not sure if an immunoassay is used for these tests or not. Told doctor that I was taking biotin and gave her the article and explained it had affected tests for me before,but she didn't seem interested!

[Saggyuk in reply to MiniMum97]

I don't think there's much room in your results for adding any more without making you over-medicated and your T4 and T3 levels will be too low if you reduce. Always worth trying though I suppose, we're all different.

If you had electrolytes tested, always worth having a look at them for yourself as docs often miss things.

Not sure about biotin and electrolytes to be honest

[Saggyuk in reply to MiniMum97]

How long before the tests did you take your last dose of thyroid meds?

[MiniMum97 in reply to Saggyuk]

I always leave 24 hrs.

[jgelliss]

I would suggest Adrenal /Cortisol saliva 24 hour test too . Adrenal and Thyroids work together .

[SeasideSusie Remembering]

Folate is too low, it should be at least half way through it's range (26.5+ with that range). A good B Complex containing 400mcg methylfolate will help.

Vit D is too low. The Vit D Council recommends a level of 100-150nmol/L.

Ferritin is way too low. Thyroid hormone can't work properly unless it is at least 70. Eating liver regularly, maximum 200g per week, will help raise it.

[MiniMum97 in reply to SeasideSusie]

Thanks for your reply - since this test (and before!), I have been continuing taking 2xspatone a day (I can't tolerate any other iron supplements) plus liver once a week, a thornes b complex, and 5000iu Vit D with k2 a day.

They don't seem to be making any difference.

Just want to know next steps - retest vitamins etc? get a full iron test? Try to persuade GP to up levo?

I am surprised that everyone thinks my thyroid tests are ok - T4 and T3 are only 50% through range and I had thought that they ideally needed to be in upper part of their ranges? Dr Toft's article suggests that some people need T4 to be over range. Are the responses above because of my low TSH? I thought this didn't matter if T4 and T3 were in range?

[SeasideSusie Remembering in reply to MiniMum97]

Do you have any gut/absorption problems or low stomach acid which would affect the absorption of your supplements?

To test low stomach acid at home with baking soda test scdlifestyle.com/2012/03/3-...

Dr Toft's article clearly states your TSH can be suppressed and FT4 high and has since written another article about some people needing T3. I don't have a link, SlowDragon will have it if she's around.

How long since you tested vitamins?

What were the actual result of your negative antibody tests? It still might be an idea to try gluten free.

[SlowDragon Administrator]

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Is this how you did the test?

I agree with SeasideSusie your folate, ferritin and vitamin D are too low

Magnesium supplements can help with muscles and heart palpitations. Calm vitality magnesium powder is cheap and easy to use. Make sure at least 4-6 hours away from taking Levo. Or you can get magnesium butter, spray or Epsom salts once a week

A good vitamin B complex that includes folate would improve all B vitamins

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Selenium supplements can help improve conversion. Recommended to get one that includes vitamin E.

Suggest you try strictly gluten free diet for 3-6 months to see if it helps

Only change one thing at a time

Get vitamins optimal and retest in 2-3 months

Your FT3 is probably too low. It may Improve with better vitamins and gluten free. If not then you have two options, try increase in Levo or add small dose of T3

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...