Any soloution to body pain?: Hopefully some of... - Thyroid UK

Thyroid UK

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Any soloution to body pain?

magsyh
magsyh

Hopefully some of you lovely people out there can advise. I started on NDT 3 weeks ago. Within a few days it was a scary rollercoaster of deep depression 1/2 grain split 2 doses. I couldnt take it after 5 days and instead tried 50mcg levo. Depression dissapeared but after 2 weeks of levo the body pain is getting quite unbearable. Its like bad hypo symptoms. Neck, shoulder, leg and foot pain. Ive had a lot of muscle twitching too. Is this the feed back loop thing kicking in? If so how long does this go on for? Do i just ride it out? My ft3 was very low at 3 (3.1-6.8) when i started 3 weeks ago so im worried its even worse now?

15 Replies

What sort of pain is is? Bone? Muscle? Joint?

Your FT3 is very low, what are your other readings? TSH? FT4?

I doubt it has anything to do with the feed-back loop itself, more to do with low T3. And, having low T3, you could also have low nutrients. Have you had your vit D, vit B12, folate and ferritin tested? If not, it would be a very good idea to get them done. Low nutrients can cause terrible pain.

magsyh
magsyh in reply to greygoose

I would say its muscle and joint pain only been in the past few days the neck pain is causing headaches too. My tsh was 2.7 (0.4-5.5) t4 was 13.1 (10-22). Last time i had everything tested by bluehorizon my vit d was 58. Folate 21 b12 578. Im still supplimenting all of them. I just thought the only thing new was the levo and maybe 50mcg wasnt enough but too early to raise it.

greygoose
greygoose in reply to magsyh

Well, your vit d is still too low, and that could be causing joint pain. And, your muscle pain could be caused by low zinc. Try taking some zinc.

Are you taking he cofactors for vit D? Vit K2 - MK7 and magnesium?

I doubt 50 mcg is enough, but as you said, too soon to increase it. You need to retest after six weeks.

In the meantime, have you tried CBD oil for pain? It doesn't wonders for my back pain - and I couldn't stand straight, some days!

But, only try one thing at a time. If you start taking a lot of new stuff all at once, you won't know which one is helping. :)

Peanut31
Peanut31 in reply to magsyh

Hi magsyh

I can relate to your neck pain, muscle pain.

I have been struggling with this, mine is stiffness in my neck and my shoulder muscles they feel sore and burning, my neck then feels so tight which creates a tension headache, this then causes my lower back to feel tight. Its very bad in the mornings.

I am currently investigating everything, I am having private scans, you name it I am investigating why this is happening. I have already been to the NHS, and they said it was an ear infection at first, (my ears were blocked as well) sent me home with antibiotics.

I have been to see a pain clinic and they have ruled out fibromyalgia, which is good and have suggested MRI on my cervical spine, lumbar and sacral. This is all being done privately though.

A friend has suggested polymyalgia rheumatica, which I am looking into.

My vitamin levels are good, and my CPR level came back good. There are other tests for inflammation that relate to polymyalgia, but, as I have said I am looking at all areas as this has been going on for months now.

I was on levo at first and my blood results were good, but, the pain got too much, so I ended up on T3, as soon as I started this the pain went, but then it came back again worse than before.

I am now on NDT but, only on a small dosage, but it is not making a difference to my stiffness.

The only thing that helps control the pain is paracetamol and ibuprofen together, I take 2 paracetamols and 2 ibuprofen every 6 hours, this is if I can't cope with the pain.

Please don't exceed the NHS recommended amount.

I also use a hot water bottle that I sit around my shoulder area, and one of those wheaty bags that you heat up in the microwave, this sits around my neck like a scarf, I got mine from Argos. They do cold down fast but the heat helps.

I take magnesium tablets and I have also brought some magnesium oil to rub in to the area, I have a warm bath in magnesium flakes and have a good soak to relax the muscles.

I have tried CBD, but, found that it didn't help, I don't think I tried it long enough, but, it tasted like I was eating a mouthful of nutmeg and dirt!!! even though I placed it under my tongue, then washed it down with water.

It's just a case of ruling everything out, slowly and be prepared to have to fund all this yourself.

Best wishes

Peanut31

magsyh
magsyh in reply to Peanut31

So you are on a low dose too? Im wondering if body doesnt like low dose? Im hoping it will go away i have been avoiding painkillers. This is the lowest my t3 has ever been but the NDT made me feel so depressed so i was hoping the extra t4 would help as i always seem to be short of t4. Every winter i have a problem but this has been the worst pain wise.

Peanut31
Peanut31 in reply to magsyh

Hi

I have been suffering with neck stiffness on and off for many many years, then I started with other issues. I paid to see a private endo after someone mentioned I could be suffering with thyroid issues. He diagnosed me with Hashimoto's and I tested positive for Epstein barr virus, which the endo said is why my neck was so stiff.

A course of anti virus tablets didn't help and because my TSH was only 6, he said no medication would help. Everything get worse and then my GP stepped in when my TSH got to 12.2 (I can't remember the other results) anyway.

I got up to 125mcg of levo increased every 6 weeks by 25mcg and blood test via the GP.

The blood results did look good apart from my T3 which seems to lag behind.

The GP was getting twitchy increasing my Levo as my TSH was suppressed. The muscle pain never went away with Levo neither the neck stiffness despite trying different brands, in fact I hated Levo altogether.

I was in tears everyday with pain. I took the decision to stop levo as my thyroid symptoms never went away and I felt like a walking zombie and lifeless.

I started on T3 only very slowly and monitored my blood pressure/pulse etc. As I said the pain went, the pains in my muscles everything it was brilliant, then out of the blue is came back worse than ever. I was only on 37.5mcg of T3 and if I tried to increase it was awful that's when the major headaches started. The pain was so intense it made me sick. Every time I took my T3 an hour later my neck would get even tighter, and my muscles stiff.

NDT - I am only on 1 and a half grain of NDT at the moment, this is not enough, but, slowly does it. I was very slow at increasing my T3 as well. I am on Thiroyd as I believe there are last fillers. I am also gluten free as I believe that can cause muscle stiffness for some. I am not completely dairy free (I have Almond milk on cereals and drinks) but I know if I have too much milk that is hidden in foods, then my fingers and feet start having muscular pain.

It's a case of keeping a record and ruling things, with thyroid issues, what works for one doesn't work for others.

Best Wishes

Peanut31

magsyh
magsyh in reply to Peanut31

I have been gluten free for 4 years dairy free for a year. I do miss cheese. I dont have hashimotos. In the past my pain has been hormone related. Perhaps you should check your progesterone levels being deficient caused me a lot of pain a few years back.

Peanut31
Peanut31 in reply to magsyh

Hi

Yes, my DHEA and other hormones are low. I’m off to see an Endocrinologist that I got from the list provided by Thyroid U.K.

Hopefully they will be able to guide me with regards my hormones

Unfortunately, it’s not until

January.

Best wishes

Peanut31

magsyh
magsyh in reply to greygoose

Ferritin 118

greygoose
greygoose in reply to magsyh

That could be good. But, have you had your CRP tested for inflammation? High levels of inflammation - which you probably have - will cause ferritin levels to rise to a false high. So, you need to know that number, too.

magsyh
magsyh in reply to greygoose

My crp has been rising as my ft3 has dropped last test was 6.8. Ive had low thyroid for quite a few years. It all went to pot after a ct scan with iodine contrast. My t3 went very high compared to my t4 and over past couple of years every blood test crp rising and ft3 dropping but docs kept telling me i was normal. I finally said enough when my t3 hit a low of 3. Went private got a prescription for the ndt. My gp is not amused so i dont want to go complaining to them because i know they will blame the levo and tell me to come off it. If i speak to my private gp £79 for 15 mins!

greygoose
greygoose in reply to magsyh

I understand you don't want to go back to your GP. I avoid GPs when I can, too! So, you need to look after yourself. Like so many of us do. :)

If your CRP is high, then you don't really know what your ferritin level is. So, best not to supplement iron - unless you can eat a bit of liver from time to time? But, do work on the vit D.

You might not get enough magnesium from a gel. Might be a good idea to try supplements, as well. Or take Epsom Salt baths. But, I would recommend CBD oil for the pain. :)

magsyh
magsyh in reply to greygoose

Many thanks Greygoose I don't eat liver but up here in the far north we have a very good black pudding!☺️

greygoose
greygoose in reply to magsyh

OKl, that should do as well. :)

magsyh
magsyh in reply to greygoose

Yes i take 3000-6000iu per day with k2mk7 i have also just started using uvb lamp after the pain set in. We live in Scottish islands so hardly a peep of daylight at the moment. I use magnesium gel to rub the sore bits.

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