Painful hands ?

[Milpol]

Have been really struggling with pain in my hands, particularly pains from my thumbs to my wrists and including painful wrists too.

Could this be linked to my Hypothyroidism?

I take 100 mcg Levothyroxine daily.

Advice greatly appreciated x

[Marz]

Do you have any recent result with ranges you could post ? Maybe your FT3 is low. Also consider Low B12 and Low VitD

[Milpol in reply to Marz]

Many thanks for responding so quickly Marz.

I’m expecting my Medichecks kit to arrive today to test my FT3 .

My GP will only test TSH so I am pretty much in the dark with regards to my levels.

I have been on Levothyroxine for a year now and do not feel any better for it.

Will post results when I get them.

Thank you once again 😘

[Marz in reply to Milpol]

Also Test B12 - Folate - Ferritin and VitD - they are key

[Milpol in reply to Marz]

Thanks Marz , I will.

😘

[Ginny_Ickle in reply to Marz]

D is cheap to test, also, and deficiency is endemic.

Magnesium is another nutrient of possible interest, and one commonly deficient, but blood tests don't reveal much. It's so vital as an electrolyte, the body generally keeps blood levels normal except when excess or deficiency is severe.

An Epsom salt soak is worth a try. Tub or handbasin. The magnesium and sulfate both help some joint pain, and absorption aside, it feels nice.

[Milpol in reply to Ginny_Ickle]

Thank you so much for the advice. I’m really quite ignorant about all that !

[SilverAvocado in reply to Ginny_Ickle]

And if you find you like Epsom salts, make sure to go online and buy a large container for a cheaper price - in the supermarket they treat it like gold dust

[Milpol in reply to SilverAvocado]

Thanks xxx

[Pascha1]

Yes I have the same and i'm Hypo on 100 levothyroxine and 20mgs Liothyronine GP sending me to hospital for tests for Carpel tunnel, apparently you can get small op to fix it, he did offer me a steroid injection but didnt fancy an injection in the inside of wrists that sounded painful so gave that a miss

I have also seen somewhere it says that when your thyroid treatment is at correct dosage it goes away.so maybe someone can tell us both on that

I feel for you its very painful its killing me at night time Im in tears with the pain, but not so bad day time.

[Milpol in reply to Pascha1]

Thanks for that Pascha 1. I’m sorry you’re experiencing the same pain. It’s very uncomfortable and I find my grip is not what it used to be as the pain takes over and I can’t hold things for any length of time .

When I went to my GP with this problem , he said it was from playing Netball as a kid at school! I’m 60 , so don’t think that’s very relevant and hated Netball anyway, so never played it. So think he was talking out of his behind!!!!

[1tuppence in reply to Milpol]

Have only just seen this, so sorry for delay in replying. I offer my experience, not to tell you what to do, but simply as my experience.

For several years I too suffered from very painful wrists. They would become so painful the only ease came from wearing elastic bandages on each wrist. After the all too typical long and wearying period of awful hypo symptoms, despite being told my results were "normal", I was eventually given a trial of Levo. It had an impact!!! eventually my dose went up to 100. My wrists still hurt, my knees were so painful, and my legs didn't have the strength to lift and move themselves into a comfortable position. The only way I could move my legs to get into bed and lie comfortably, was to use my hands to lift my legs into place. My hips hurt too, as did my shoulders from time to time.

Other hypo symptoms started to recur, so I did my own trial of upping to 125. It was unbelievable. Not only did the symptoms fade away, after a week I realised I hadn't needed to bandage my wrists as they no longer hurt....and nor did I have to lift my legs into place in bed! Wow!!

My GP of the time was supportive when I told him what I'd done, and why.

I've since moved house, and due to my own silliness in taking meds on day of blood tests, my current GP asked me to reduce my dose back to 100. I did.

But, I won't be agreeing to do that again. Symptoms started returning. It suits me on 125. My wrists do not hurt. My other joints are no longer troubling me. My knees are more comfortable, despite having osteoarthritis requiring knee replacement. And I wonder about that. Since resuming 125 my knees are less bothersome. I am able to walk gently. I still find difficulty in standing for too long, but even that has improved.

I do hope you find relief for your hands and other joints.

Wishing you well.

Tuppence

[shaws Administrator in reply to 1tuppence]

You still may need to look at your FT4 and FT3 results. If either are too low we don't feel well and can have symptoms.

[1tuppence in reply to shaws]

Thank you Shaws. As I'm feeling pretty good at the moment I'm avoiding Drs It was the suppressed TSH that caused GP concern., not the high T4 nor the super duper T3.

[shaws Administrator in reply to 1tuppence]

They always get anxious if TSH is suppressed as they've been told it leads to heart disease or osteo. Most probably we'd develop these if underdosed.

I had carpal tunnel syndrome quite a number of years before having hypo. I saw a very good doctor (I had insurance cover through work) and he referred me to his physiotherapist who worked miracles and solved the painful condition which I've not had since. The doctor was also the one who discovered I had pernicious anaemia and I started on B12 injections and I have been fortunate never to have had any symptoms at all.

[Milpol in reply to 1tuppence]

Thanks Tuppence for sharing your story. I too wonder if I need more medication as some of the symptoms which disappeared when I originally started Levothyroxine are starting to return. I am due another blood test but think my TSH will be suppressed so won’t be offered any increase!

[1tuppence in reply to Milpol]

My original helpful GP who offered me the trial of Levo had only ever focused on the TSH..... and only had that checked for his own hypothyroidism. He was surprised and interested when I explained what I've learned from HUL re once on Lev TSH is less important than what T4 and T3 results say.

My new GP tho very understanding and helpful, also did not realise that taking Levo will mean the TSH is no longer required to stimulate the thyroid to produce thyroxine....

Perhaps go armed with info from TUK and HUL ?

[Milpol in reply to 1tuppence]

An excellent idea. Such a shame that we are the one’s having to educate our doctors!

[shaws Administrator in reply to Milpol]

It is a clinical symptoms and the problem is the doctors know none but will give you a different prescription for the symptom instead of finding out if you are on an optimum

dose of hormones.

thyroiduk.org.uk/tuk/about_...

[trelemorele in reply to Pascha1]

Don't go for an operation if CT is caused by thyroid.

I'm talking from my own experience. It will cause a lot of pain, you won't regain full thumb to fingers strength for years and won't fix the issue of CT.

Only once your thyroid hormones are fully and correctly replaced, CT will go away.

Take it from someone who had it done on one hand (less affected) and was encouraged to do it on the other one and refused as soon as I realized it was pointless.

[Milpol in reply to trelemorele]

Thank you. Wise advice. Really appreciate it. I’m a bit of a coward so having an operation would definitely be a last resort for me!!!

Sorry you had to go through an operation that didn’t improve the problem 😢

[Pascha1 in reply to trelemorele]

Thank you do much for letting us know that doesn't sound very good and I will not bother going to hospital for appointment then ,

Sorry you had to go through all that pain and it not get better So glad you told us about it though,

Why cant GPs take a few day or 2 to train how to treat us properly instead of putting us through even more pain than we already are in >

I have seriously lost all faith in GPs not that i had much trust in the 1st place..

[1tuppence in reply to Pascha1]

Pascha 1, I'm so sorry your are in such pain. Perhaps you could read my reply to Milpol? I don't take T3.

Wishing you comfort...pain is so tiring.

1Tuppence

[shaws Administrator in reply to Pascha1]

Carpal Tunnel is one of the many clinical symptoms. I think doctors should look more closely at FT3 and FT4 before referring hypo patients. It is usually not being on sufficient doses that cause symptoms.

thyroiduk.org.uk/tuk/about_...

Maybe tick off the symptoms on the above and give to your GP and request FT4 and FT3.

[Milpol in reply to shaws]

Thanks shaws, will do. I definitely have a return of some symptoms which had disappeared when initially put on Levothyroxine.

Thanks xx

[MariLiz]

I have this too and it seems to be worse in the cold weather. I had wondered if it might be arthritis? I know my VitD was low when I had blood testing done by an endocrinologist (privately). My GP has never tested my VitD since, so I suppose I will need to get that done privately.

[Milpol in reply to MariLiz]

I did ask my GP and he looked at my hands and said I had no arthritis. He said it was probably from playing Netball when I was at school! I’m 60 and never played Netball at school because I hated it ! So clearly, he had absolutely no idea !

By the way Marz, just looking for a B 12 test on Medichecks, it has B12 and active B12 tests.

Which would you advise ?

Thanks x

[MariLiz in reply to Milpol]

Hi Milpol, you replied to me MariLiz, Marz is another ( far more knowledgeable) member of the forum. Hopefully she will see this, otherwise reply directly to her.

Good luck with the hands, and I never liked netball either! Hockey was worse!

[Milpol in reply to MariLiz]

So sorry MariLiz, my brain fog is bad this morning!

I’m sure you’re more knowledgeable than I am .

Agree, Hockey 🏑 was definitely worse, ha ha 😘

[MariLiz in reply to Milpol]

No problem.

Struggling myself this morning, terrible shoulder pain is making every move difficult.

Brain is just about functioning though.

Wouldn’t it be great if everything was OK for once? 😳😊

[Pascha1 in reply to MariLiz]

You sound like you need Liothyronine T3 can you get a referral to an Endocrinologist and get a trial , check he's a sympathetic one thyroid uk have a list of them, what area are you in?

[Milpol in reply to Pascha1]

I’m just about to take an FT3 Test so if that comes back low, I will definitely see someone. I can travel anywhere to see a good Endo. Can you recommend anyone please?

[MariLiz in reply to Pascha1]

I had a trial, my Endo said I needed to have it, he wrote twice to my GP. Unfortunately, the CCG in Essex won’t allow the GP’s to prescribe it. I did buy some via the Internet but had a skin reaction. Obviously the fillers were different to the one I got from the Endo. During the trial it had doubled in cost too. So I can understand the GP’s reluctance.

[Milpol in reply to MariLiz]

So do you not take it anymore? It’s such a terrible shame we have to fight so much to get this medication 😧

[MariLiz in reply to Milpol]

I stopped taking it after having a referral to the hospital Dermatology dept. I’m still having tests and skin biopsies. So yes, I stopped.

[Milpol in reply to MariLiz]

I hope they are able to help you then maybe you can try another brand of T3. Good luck 😘

[Ginny_Ickle in reply to MariLiz]

Shop around a little, it should be a pretty cheap test. Do you have your numbers from the old test?

(I am on pretty high dose D3 supplementation, to keep my levels in range. First time they tested mine, it was one notch up from undetectable. O.o)

[Ginny_Ickle in reply to Ginny_Ickle]

Oops, that was for Milpol

[Milpol in reply to Ginny_Ickle]

Hi Ginny Ickle,

Yeah will get a Medichecks B12 Test done. I was supplementing but stopped a while ago to have other private tests done and didn’t want the results screwed up. I’ve never actually had it tested before as I have a GP who believes nothing else is important other than TSH 😮

[Ginny_Ickle in reply to Milpol]

Argh

[Marz in reply to MariLiz]

City Assays Birmingham is one source - there is a website for ordering tests for VitD. Also Medichecks and Blue Horizon - through Thyroid UK .

[MariLiz in reply to Marz]

Thank you Marz, I will check them out.

[Marz in reply to MariLiz]

thyroiduk.org.uk/tuk/testin...

[Milpol in reply to Marz]

😘

[SlowDragon Administrator in reply to MariLiz]

With thyroid issues we need to supplement vitamin D and keep levels up around 100nmol

You will likely need to supplement vitamin D every day

[MariLiz in reply to SlowDragon]

Thank you SlowDragon, I think my level was 40 if I remember correctly. So definitely I will need to supplement.

[Milpol in reply to SlowDragon]

Thank you SlowDragon. I am still learning about the importance of supplements. Appreciate the advice 😘

[Milpol]

Absolutely. Sometimes I wonder if it’s all in my head as I never seem to feel well anymore.

Hope the shoulder improves soon.

My hubby has just had a subacromial decompression operation on his shoulder, so understand how shoulder pain impacts everything you do.

Hope you feel better soon 😘 x

[MariLiz in reply to Milpol]

Thanks very much. I see a chiropractor for my back , so I will probably get him to check my shoulder if it doesn’t improve.

Hope your hubby’s shoulder is OK now? x

[Ginny_Ickle]

Whatever the cause, appropriate physical therapy might help. It also gets the diagnosis track started. And, if braces would help you regain function, the folks there can advise and/or refer you to the orthotic issue.

You can self-refer.

You also might ask your GP or endocrinologist for a rheumatology consult, in case another autoimmune problem is in play.

[Milpol in reply to Ginny_Ickle]

Thanks that’s a possibility as I’ve been suffering for a few years now. Thank you for your advice xx

[Ginny_Ickle in reply to Milpol]

Good luck! If there is some RA or Sjogren's activity, the good news is, they have much better treatments now, especially when it is caught early. (I have Sjogren's)

[Ginny_Ickle]

Well... There's a lot of unrelated carpal tunnel, too. Underdesigned joint!

[hypercat54]

Hi I am borderline hypo but some fingers and the tips especially are numb and they go dead sometimes. I have also found my muscle aches especially my back is much worse than usual. I can barely walk now with the pain. x

[MariLiz in reply to hypercat54]

Ask for your B12 to be checked out. I was considered borderline hypo for years before I eventually got treatment. It can totally trash your vitamin levels, and low B12 can cause numbness.

[hypercat54 in reply to MariLiz]

That was tested too and I was told it was fine. x

[Milpol in reply to hypercat54]

Really sorry to hear that hypercat54. I hope you can get a diagnosis soon as maybe medication might help relieve some of your symptoms. If your GP isn’t willing to help, find one that will. It seems you have to really fight for recognition with this disease.....

Good luck.😘

[hypercat54 in reply to Milpol]

Thank you Milpol. From what I have seen here it seems you have to become an expert on the thyroid and be proactive to get any help. x

[Clarrisa]

I was given conduction tests (Nerve conduction tests I think they were called), then given wrist supports to wear at night. I think finding the underlying issue as the above posts explain makes a lot more sense.