Is my Under-active Thyroid causing my Tingling,... - Thyroid UK

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Is my Under-active Thyroid causing my Tingling, numb, aching legs and painful knee caps and dreadful weakness?

Flowers14 profile image
10 Replies

Hi, This is continued from my earlier post. I've now got my Ranges. Thanking you.

TSH 0/06 MU/L RANGE 0.27-4.20 mu/L

free T4 20.2pmol/L RANGE 9.00-26.00pmol/ L

serum B12 >2000 ng/L range 191.00-663.00ng/L

serum folate >20.0 ug/L3.90-26.80 ug

I'm so weak, exhausted and very tired.

Flowers14 :)

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thyroidrose profile image
thyroidrose

Flowers I am not a doctor and some on here may be more versed in helping you, so hopefully they will post, but i can tell you that I was recently over medicated (TSH of 0.045) and felt worse than when I was under medicated. I'm now working to bring the TSH up a bit.

I had hideous weakness during the worst of the hyper phase and it is still continuing although getting better. How much medication are you taking and what kind? What did your doctor say about the TSH?

Flowers14 profile image
Flowers14 in reply tothyroidrose

I'm now on 125mch levothyroxine. It was reduced from 150mcgs and my thyroid went so hyper I was very ill indeed. I went really hot, couldn't move with weakness , then I lost all my appetite and then the worst of all becasue I was already very ill with a bulging disc All food in my body fell out of me. I was like a useless Rag doll. My gp bought it back down to 125mcgs (what i'm on now).

My gp did want to bring it down actually. Howeveer, I was reluctant as being on 100mcgs I was so ill to. I was ICE cold, not just cold. my hair was falling out loads of it. But, little did I know I had No iron in me, my blood had heamolized and eventually found my B12 was so low I had neurological symmtoms. Plus a bulging disc all at the same time.

Perhaps I will lower it tonigh by 25mcgs and tell my gp on monday as I feel terrible.

Thanking you :)

Flowers14

thyroidrose profile image
thyroidrose in reply toFlowers14

I understand, it is so hard to get a grip on one's health sometimes. Hopefully this is just a temporary place we are in and we will eventually crawl out of these states!

Did you get your B12 and iron addressed?

I think reducing to 125 mcg would be a good idea. Hey, that might even be your sweet spot!

Saggyuk profile image
Saggyuk

Hi there

Your results suggest a possibility of overmedication and as mentioned by thyroidrose , it can make you feel more tired/weak than hypo but would be hard to tell without a full thyroid panel that includes T3 as you could just be optimally medicated.

You don't mention a result for Iron/ferritin and Vit D? I see you supplement both. If not rechecked, you should retest these as unlike B12, too much of either of these will cause just as many issues as not enough? Vit D deficiency causes pain in my leg bones - what dose have you been taking, how long and what was your original result? Same for iron - did you have a full blood count, ferritin and iron panel?

Have you tried gluten free - My legs and knees used to hurt really bad due to inflammation and lord knows what else until I gave this up and many of us here have found it helps with many things? Have you considered coeliacs or gluten sensitivity considering some of your other digestive symptoms mentioned on your previous post?

You can pay for your own tests if necessary for a reasonable cost.

Flowers14 profile image
Flowers14 in reply toSaggyuk

Hi Saggyuk

Yes this is making sense that I may well still be over-medicated as its just been reduced by 25mcgs. Gp wanted to reduce as i mentioned above.

I'm watching my Iron and gp tested it, its gone very high from 16 right up to 120 I think. I asked my gp if I should not take anymore Iron and she said since I lose Iron quickly we'll just lower the dose to one tablet per day. I SI B12 and shes 100% in agreement with me. MyVit D has just been checked but I'm still on high amounts of that. I was on 10,000 per day but about 4 days ago reduced it myself to 5000 (one tab per day). My vit D is 173 nmolL range >50.00nmol/L 25-OH.

Ive had a few people mention to me i might need to try gluten free but I think ill try lowering this dose of levo again as what my gp had originally wanted to do.

Glad the gluten free has worked for you. It will be my next move if this lower dosage doesn't help. Thanking you kindley for your help

Floweers14 :)

Saggyuk profile image
Saggyuk in reply toFlowers14

Vit D at 173 is a little too high so retest after a couple of months and see if you've reduced your dose enough to get it more in line. You don't want too much of this as can increase your calcium levels too high.

In regards to iron, ferritin can be misleading so always worth an iron panel and full blood count next time for a clearer picture.

Low iron is also often associated with coeliacs or gluten senstivity, I was on iron pills for 20 years before i gave up gluten so might well be worth a go but yes, see how you feel after these changes.

Sometimes when we correct deficiencies, our thyroids can work more efficiently so don't need so much as before :-)

Flowers14 profile image
Flowers14 in reply toSaggyuk

Ok thanks. She did a full blood count but it was to big to post lol. Should I try to post it?

Saggyuk profile image
Saggyuk in reply toFlowers14

If it's not showing any abnormalities or anything right at top or bottom of range, then I would imagine it's fine - it's just always useful alongside iron panel on top of ferritin to ensure that the ferritin is not being deceptive - just retest all in a few months to ensure all where they should be and reductions in doses have been enough :-)

Saggyuk profile image
Saggyuk in reply toFlowers14

You could always get a full thyroid panel including T3 to be better placed to make a decision as to whether you should try for another reduction? If you found you were possibly a little over medicated with these, and then lowered and found not medicated enough, there are other options such as 100/125 on alternative days for something more in the middle :-)

HASHISmom34 profile image
HASHISmom34

Hi Flowers. Once you have your TSH optimal and your FREE T4 & FREE T3 also optimal if you are still have issues then you certainly need to look at your vitamin and mineral levels because if they are not where they should be it causes symptoms, I am not talking about just within the lab range because you can still see symptoms but indeed optimal. also look at your gut health. I am severely lactose intolerant as is my youngest. I also have a gluten sensitivity and my son had SIBO. All of that can make you think that you are having thyroid issues when indeed again it can be your stomach (digestive system or sensitivities) or a nutritional issues. It was a very long road for me (still is) even after i finally got diagnosed, but definitely worth putting in thew work.

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