Have been on levothyroxine for 2 years. Am having dizzy spells, sweats and weak muscles. Anyone else get this?

[JoLancs]

I am on 125mcg levothyroxine but am having what feels like a low blood sugar espiodes, sweating, dizzy, blurred peripheral vision, shaking. Dr says there's no link to thyroid. Am not convinced. Has anyone else had anything similar? Don't quite know where to turn next.

[Hidden]

I'm not on meds, I just had an op & feel slightly less weird than before.

Yep doc says can't be thyroid - you're 'normal' (rolling on floor smiley)

Feels like a sugar rush - woosh up though your body? - tremor, palpitaions etc.

At a guess (and believe me I do not know what I'm on about) your dose is too high and your'e hyper not hypo......

again - I know nothing except I hate unanswered posts

weak muscles - I know that one! pains & cramps

Go back to your GP and be convincing! Jane

[Diddy in reply to Hidden]

Hi Spareribs

I've got graves but carbimazole made me underactive so they've given me

thyroixine as well. I got the same symptoms as you and they gave

propranolol as well.

Lord I'm more confused than ever now!

What is going on with these docs and specialists. Don't they know what

their doing...

Did

[Maggiet in reply to Hidden]

I was on propanalol but was told by my endo that it was contraindicated with thyroxine and so I came off it!! It was the same story with the betahistine that I had been prescribed for dizzy spells - so I came off that too. That's the prob with being prescribed different drugs each time a new symptom comes up. I thing we all get rather confused by it all!

[shaws Administrator]

I fully agree with phicks re levothyroxine I was always unwell with a myriad of symptoms. My life has done a complete turnaround since I was prescribed T3 and reduced T4 (Eltroxin). The palpitations have gradually faded and ceased. and all my other symptoms resolved. My GP would not prescribe Armour or T3 but the Endo prescribed a trial of T3 did when I lost my hair.and had insomnia.

I think all of us should be able to trial things other than levothyroxine.

What suits some people may not agree with others.

I now feel so well although I am aware one could still have some 'ups and downs.

[nanniejan]

Can i just ask have you hands or feet got any bigger ,I know this sounds like a funny question but I have some of the same symptoms ??

[nanniejan in reply to nanniejan]

No not really ,mine have grown my shoes have gone up a whole size so i'm now being tested for Acromegaly another autoimmune disease ,waiting for my test result at the mo !!!

[Stourie in reply to nanniejan]

Hi phicks I was diagnosed hypo four years ago and wore a size six all my adult life until now . I now wear a seven and Im fifty eight???

[nanniejan in reply to nanniejan]

I'm really glad you said that you have had the same thing with your feet growing ,I have been really worried about the outcome of the tests ,sometimes it would be better if they just done the tests and then told you the results.

I feel so ill I just wish they would find what is wrong .

[crow in reply to nanniejan]

Hi Nanniejan,

Did you know that the Pituitary gland controls the Thyroid Gland AND produces growth hormone (GH). It is not as common, but it MAY be that you have a malfunctioning Pituitary gland that is causing both Hypo/Hyper thyroidism and growth to hands and feet. Your endo may have already checked this out.....if not then it may be worth having some blood tests for abnormal GH levels?????

Good Luck

Crow

[crow]

Dear JoLancs,

I have really bad fatigue, weakness, sweats and dizzy spells (feeling drunk), along with muscle pain, cognitive problems (short term memory, concentration, thinking and finding words), IBS symptoms, nausea and almost complete insomnia. I have had hypothyroidism now for 3 years (200mcgs of Levothyroxine) and have also now been diagnosed with Chronic Fatigue Syndrome or M.E.

I have absolutely no idea whether these symptoms are related to Thyroid or to CFS/ME and.....NEITHER DO THE DOCTORS!!!!!!! Cost cutting measures - recent, current and future - will ensure that there is precious little money available for either decent drug treatment, nor for research.

There are loads of Neurological / immunological symptoms associated with CFS/ME (and also with Hypothyroidism). Many of them overlap. I have been trying for ages to make a distinction between the two (also with MS), without any success. A 10 minute consult with a non specialist GP is NOT sufficient to make an accurate diagnosis if you have more than one complicated illness.

I am hoping to follow this post with much interest and wish you all the best in your search for answers. It's tough going when you are feeling so unwell and lacking so much energy....BUT....keep up the good work. The alternative is not worth considering.....lol.

Kind Regards

Crow

[Hidden in reply to crow]

Funny that Crow - Doc thinks I have CFS/ME too - I don't actually get a diagnosis, but I'm still thinking thyroid is the culprit for now after a partial thyroidectomy.

JoLancs - I've spoken to a few people who have both hyper and hypo symptoms. Can you get to see an Endo?

Nanijan - I questioned my GP why they only test TSH (released by the pituitary) not T4 from the Thyroid, especially since my Dad had acromegaly (Head x-ray found Pituitary problem) and his feet enlarged 2 sizes - are your hands 'spongey'?

Good luck to all, Jane x

[nanniejan in reply to crow]

My hands are really painful and stiff and my ring size has also been changed three times,endo is waiting for blood tests to come back because I have a fear of MRI don't like being shut in ,should get results next week.How was your Dad with his acromegaly ??

thanks spareribs for your comment .

[Hidden in reply to crow]

Hi nanniejan - I added to your previous post.

My hands are painful too (& arms etc) feel like they're not mine! Please don't worry about MRI - I worried for no reason, just take the opportunity - it doesn't even hurt (lifts are much worse!).Dad was fine for years with fortnightly injections.

[nanniejan in reply to crow]

have replyed on conversation ??

[Hidden in reply to crow]

Nanniejan - I tried to start a conversation but nothing's happened!

Sorry to clog up this thread.

[JoLancs in reply to crow]

Thank you everyone so much. I thought I was on my own! Have been back to Dr and insisted on more tests (lots more). Wouldn't have done it if it wasn't for your support.

[crow in reply to crow]

Dear Spareribs, They will only give you a CFS/ME diagnosis when they have ruled out ALL other possible diagnoses for your symptoms. I hope it is your thyroid because at least there is some treatment for that - if you have ME there is no treatment, although it is a physical illess (neurological and immunological) according to NICE and the WHO (World Health Org). The GP/Endo SHOULD get you to the point that your thyroid is under adequate control so that this can be ruled out as a possible culprit for your symptoms. He/She can then diagnose CFS/ME, is all else is ruled out also.

Good Luck,

Crow

[nanniejan in reply to crow]

I have replyed to you on conversation

[Hidden]

Hello Jo,

Your adrenals are partly responsible for keeping your blood sugar levels stable. They have a hand in lots of other stuff too - shaking - sweating - dizzy,,,

If your thyroid meds aren't optimal your adrenals prop you up until they get tired and need support.

Have you considered a saliva test from Genova? £75 but there may be discounts for being in this group?

Nel

[JoLancs in reply to Hidden]

Hi,

This sounds like the issue I have. What is the saliva test you mentioned? Would be interested in trying it.

Jo

[crow in reply to Hidden]

Dear Nel,

Could you recommend a good medical book (or research paper) that explains the link between the thyroid and the adrenal glands (and the pituitary glands etc). I often feel very aggitated, sweats, poor body temp control - all could be related to the adrenal glands propping up my thyroid so I would like to look into this more. Many thanks.

Crow.

P.S. What happens to poorer people who cannot afford £75 or £5/week for tests/treatment. Why is it that only the rich can afford specialist consults/treatment????? This doesn't feel very JUST to me.

[LouiseRoberts in reply to Hidden]

Hi Jo

If you go here thyroiduk.org.uk/tuk/pages/... you can get a full list of the testing offered by Genova

Louise

xx

[Hidden in reply to Hidden]

Hi,

The link is well documented, suggest you google thyroid and adrenals. There is an article by Dr Peatfield here: thyroid-disease.org.uk/inde...

I was rough for years on Throxine alone, I tried T3 but it was helping the adrenals which made the most difference.

The poorer people who cannot afford the £75 for tests are largely left to suffer. They account for a large proportion of a doctors time as they back to the surgery time and time again for various ailments and are given more and more drugs.

Thyroid Patient Advocacy ( tpa-uk.org.uk ) is a charity which is specifically set up with the aim of fighting the current health system to achieve better threatment for all. Perhaps one day everyone will be treated properly if they have thyroid problems.

Nel.

[LouiseRoberts in reply to Hidden]

Nelly

I actually sent Crow our version of the Dr P article you mention, (which is included in our Info Pack) the thyroid-disease.org one is slightly out-of-date as it contains information about NPTech who are now Lab21.

Louise xx

[davvy]

i to have same problems has you also rushes of pain in my temples when i stand.im on 150 lev.sometimes it is when your meds are upped

[TrumpetLu]

When I am undertreated I get these symptoms. An increase in my Levothyroxine sorts me out.

My optician said that my eyesight was fine and the problems I was having was because my eye muscles were exhausted and couldn't compensate.

The world bounces along next to me as I walk - disconcerting...

I tend to only get night sweats (again when undertreated). Dizziness I think because of fatigue.

[Hidden]

Have you had your Vitamin B12 levels done? You may have Pernicious Anaemia. Deficiency of B12 can cause exactly these symptoms. Thyroiders are more at risk of developing Permicious Anemia (one autoimmune disease can lead to another)!!

GET CHECKED! Its just a simple blood test. Low levels over a long period of time can lead to horrendous Neurologoical problems. Believe me I know.

Loads of luck, let us know!

Ali. x

[QueenBee7046]

I got to this post when I actually bothered to read the leaflet inside stemetil box! I’ve had virtigo on and off for 12yrs.. it stopped for 3 yrs then wham out of no where. At the same time I also go diagnosed with hypothyroidism, And MTHFR. Then Rheumatoid arthritis and auto immune inner ear disease.. and low IgG.. Theu are all related and it’s so hard to get anywhere with treatment. No one knows what to do first! I get to a point where all is great, then wham! I do have injections for the MTHFR and levithyroxine. I was on cytomel in America (where we live for 3yrs and everything got diagnosed), but now they stopped it here in U.K. it’s too expensive, so I’m wondering if I’m now under medicated??