Hello yesterday I collapsed whilst crossing the rd I’ve had leg weakness for some time usually coming downstairs I also get pains in my legs constantly, I asked my endo and he said not related to hashimotos?
Hashimotos and leg weakness: Hello yesterday I... - Thyroid UK
Hashimotos and leg weakness
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fayray
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57 Replies
•
That must have been very frightening.
Do you have any recent blood tests to share? What meds are you currently taking?
Yes thankfully no cars felt a fool but no one around to notice just grazed my knee
Results beginning March
TSH 0.01
T4 - 12.3 (range 12 - 22)
T3 - 9 (range 3.1 - 6.8)
Meds
200 t3
125 t4
I guess it's lucky you weren't "witnessed" - but still worrying!
That's an enormous amount of T3 you're taking - not surprised you are so far over-range; and yet your T4 is struggling along at the bottom of range.
I've only had bad leg pains when my T3 has been too low, so hopefully someone more knowledgeable can shed more light ...
I was on t3 only a yr or so ago which worked brilliantly for a while, I think I’m feeling under medicated 🤔but I don’t know anymore just when you get on top it messes up again 😞
Your results suggest you are EXTREMELY over medicated
Ft3 is far too high. This may be reason for leg weakness
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last 1/3rd of dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Hello yes to all the above before bloods and what was tested ok I’ll check it out thank you
What dose of T3 only were you on when you felt ok? You can also get the symptoms you describe from all manner of deficiencies. Have you any recent results for B12, vitamin D, folate and ferritin? I also take a large dose of T3 only but your results and dosages are confusing me [although that's easily done] 😊 why did you add the T4?
My endo advises me to add t4 I wasn’t able to go to the loo very well plus skin problems he has checked my results and said all is fine so confusing this Illness
I'm sorry, but not surprised that you're still feeling ill. Did your Endo know you were taking 200mcg of T3 and then advised you to take 125mcg T4? Were your nutrient levels all checked at that time? I'm incredulous.
Hello yes my endo knows what meds I take and vit d calcium b12 iron etc all good although calcium a bit high
What supplements do you currently take if any? If taking Vit D, do you also take it's co factors vitaminK2 Mk7 and magnesium? Magnesium citrate powder is wonderful for constipation👍
Vit d, selenium, zinc, magnesium, vit c, vit b, vit A and aswangander I think that’s it 😬
• in reply tofayray
Ashwagandha can interfere with thyroxine absorption
Not heard of vit k2 and mk7
What type of magnesium are you taking? If it's not Mg citrate, then do try it as it solved my life long constipation problem. Vitamin K2 is required to direct any extra calcium into bones and teeth where it's needed any away from soft tissues. Do you suffer from any other health issues other than the vast array of problems being hypo brings? Have you got your actual results and ranges for everything, as Drs tend to tell us all is ok when it often isn't? Sorry for all the questions😬
I’ll try both thanks yes pages only recently saw my endo beginning of March - would you send me a list of the vitamins you take pls do I need zinc?
I take viridian magnesium citrate powder for constipation and good health but also glycinate occasionally, as my hypo constipation is so much better now. I use Better You vitamin D+K2 mouth spray but before that I took K2 separately. I couldn't say whether you needed zinc, and I only occasionally take that now as I am well, and I take a balanced one that may not be suitable for you.
SeasideSusie has good advice concerning nutrients, but would probably want to see some results and ranges first, as it's difficult without them. Perhaps you could search through some of her replies to others in the meantime, to get an idea, and then post your results in a new post and ask for individual advice for yourself. A home blood test by Medichecks or Blue Horizon would be best.
I had an undiagnosed vitamin B12 deficiency that caused me enormous problems, and yet Drs and specialists said my results were 'in range', and 'fine'. Vitamin D and folate were dangerously low too. I now take a large dose of B12 daily...Jarrows B12 5,000 and Better You B12 spray and a B complex. It took me a long time to get all the B's sorted out, but we're all different. As a result, I've lost all faith in them, and prefer to do my own tests and take advice from here. There WILL be a reason and root cause of your problems, so don't worry. Deal with the constipation first while you await your test results, as it can cause many problems and make you feel awful👍
Thanks for your advise my calcium is high and I’ve never been advised to take k2 for example I just ordered some along with magnesium citrate, I’ve taken magnesium with zinc didn't now about citrate - it’s a mine field so confusing
It's a mine field for sure!💥 But don't worry, once you get those results it will all become clearer. There's always something more to learn about this condition...everything is connected. I was never advised to take vitamin K2MK7 either...I had no idea. I was very badly let down by so called specialists and have only improved since taking advice from kind members on here. Keep reading around the forum...much can be learnt🌻🐝
200mcg T3 is huge dose
Or did you mean 20mcg?
200mcg (10 tablets per day) is also obviously a huge cost per month of around £1650 per month
T3 is currently £154 per 28 tablets
I take 50mcg 4 times a day Reduced from 250 per day when I was on t3 only so yep expensive. I don’t convert t4 to t3 is my issue
If you don't convert T4 to T3 why are you taking 125mcg of T4? And, did you really say you are taking 200mcg of T3? That's insane; 200 mcg of T3 is equal to taking about 750 mcg of T4.
Yes I’m taking 200mcg and being monitored every 3 to 6 months t 4 was introduced to reduce t3 from 250 and to help with constipation and skin rashes
SlowDragonAdministrator
Come back with new post once you get vitamin results and ranges
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten intolerance. Second most common is lactose intolerance
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
hi. I am not going to jump in and say your T3 is too high as some people, although this is unusual need a very high dose of thyroid hormone. I am very surprised by your endos lack of concern though and him increasing. Hypo symptoms happen when we are both underdosed and overdosed. When I took a big overdose of NDT for several days, my T3 was well over range but I was very sleepy and tired. Leg pain and leg weakness are very common thyroid symptoms and muscle weakness all part of it. I love the fact that now I am on about the right dose of T3 I can see muscle in my arms and legs. I think you need to take your pulse and temperature.They are the best and easiest way to gauge if you are taking too much or too little. Have you been on this high dose for a long time? What dose were you on when you felt really well?
Hello yes high t4 to start then my endo discovered that I don’t convert t4 to t3 so for a while took only t3 250mcg daily felt amazing for a while then down hill so t4 was added and t3 reduced. To keep on top it seems I have to tweet my meds as soon as my body gets used to it it stops working 🤔
Pulse and temperature? Please can you expand on this? Thanks
It was how doses were gauged before blood tests and I think more accurate. Your pulse will be slow if under dosed and fast if over dosed and temp is less reliable but it tends to be high if too much thyroid hormone or low if under dosed.
never taken my pulse is there a reliable way to do this?
It is probably best if you have not takne it before to get somebody to do it for you and show you at the same time. I will however try to explain. You find your pulse in your wrist on the same side of your wrist as your thumb. I tend to use three fingers ( never the thumb as that has a pulse as well and will confuse) and press them gently into my wrist as close to the hand as my wrist will allow. You sit to sit quietly to do this. When you have felt the pulse you can them look at a clock or timer and count the pulse for ideally 60 seconds. Wikihow will I am sure do a good explaination with pictures and uTube will have some videos.
Just had ago first couldn’t find any pulse then I could feel it in my head counted 66 in a min obviously I’ll practise for a bit 🙂
Your T3 looks far too high. If my T3 goes over the range I get leg weakness. Sometimes I can’t hardly walk. You need to reduce your T3 and stay within the range I’d say.
Hello, I live in Caerphilly Wales, I have leg weakness and now sciatica for the last 10months, and I've been on Levothyroxine since 1992 I was on 125mcg, but once I got to 60yrs my Dr dropped it to 75mcg, since then my body has developed all sorts of aches and pains and weakness, I am now Vit D3 deficient, so Dr has given me I tablet a month to take for that!
My friend's Dad is in his 80's. He started on Levo about 3 years ago. He's on 125 and feels great. Go back and argue to move your dose back up. 60 isn't some magic age where we suddenly don't need as much hormone to function.
My Auntie was on 100mcg thyroxine a day even into her 90’s.
I wonder if you should talk again to your GP about your dose?
Tibbygirl
I was on 125mcg, but once I got to 60yrs my Dr dropped it to 75mcg, since then my body has developed all sorts of aches and pains and weakness, I am now Vit D3 deficient, so Dr has given me I tablet a month to take for that!
Did your GP drop your dose purely due to your age or did he base it on thyroid test results?
It's essential that we understand our condition and how it is treated, because most doctors don't.
Ifyou don't already have them then I would get a copy of your test results - ask for a print out from the receptionist, don't accept verbal or written results as mistakes can be made. When you have the results, make a new post of your own, put your results, including the reference ranges which will be on the print out, and members will comment.
If you have developed symptoms since the reduction in dose then you may be undermedicated. Your aches and pains may be due to that but muscle and joint aches and pains can be due to low Vit D.
As you have been diagnosed Vit D deficient, what was the level (get it from your surgery) and what dose of D3 has your GP given you. How long have you been taking it?
There are important cofactors needed when taking D3 which your GP wont know about because they're not taught nutrition at medical school. Post your results, in a new post of your own, and we can help further with this and I will go into the cofactors needed and why.
Thank you
I have had leg pain most of my life. Now a real pain at 68. No GP has ever been able to help. Variacose veins removed when I was thirty , more soon moved in . Then it was suggested no point in treating again. On the plus side a referral to rheumatologist led to a decision to treat my ankle as Gout after nearly fifty years of being unable to reduce swelling, still need diuretics as well but it looks a lot better and less agonising. The ongoing pain in both legs is grim. I am currently finding the edge is taken off by taking immimpramine. I hope you get an answer soon.
Hi fayray, sorry about your fall it can be a terrible shock. Just to share that when I was first Ill with thyrotoxicosis (too much hormone dumped in one go) I had aching leg muscles and fell in the street... previously I was a fit and well 52 year old. My pain and weakness largely resolved by the right treatment. It’s weird your endo dismisses you,muscle pain and weakness is a very common symptom of under and over treatment. It’s not like you are claiming something exotic or implausible.
Hope you manage to get some good help and advice here.
Michael
fayray• in reply to
Thank you
To me, it seems like you are compansating with too much t3 of t4. If your body isn't creating any t3 from t4 why you are taking it? It is your GP's "fault" to prescribe it.
You should (after blood draw) wean down carefully t3 and also t4. I would suggest mono t3. Good luck!
I suggest ferritin levels to be checked. Something isn't right with your body. I got leg and arm weakness until iron suplement and I was so low I had to finally infuse it. Now I'm only 40mcg pre 65mcg. Hugs!
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