2/10/2018. Hello to all. Over a year ago my thyroid went very under. I was ice cold to touch and think I was close to falling into a myexdema coma. Anyway my out of hours gp upped my levo from 125mcg to 150mcg. So the freezing cold stopped, still ill with other problems but got slightly better. Then my gp came back from maternity leave and upped my levo again. I asked if that was ok as I'd already been upped. After a few weeks (can't remember how many) I started to get very hot. I had to put the fan on me and it was winter. I couldn't hold 'Any' food at all and became very weak again. I was so ill. I asked 111 for help. A CERTS teeam came to see me and said I was ok. Then 111 came to see me. They said Oh youre still going through the change it takes ages, you've a long way to go yet....they had no desire to help me. My mind wasn't right as I had been very def in B12, iron and others and in severe nerve pain. I knew nothing was going to happen so I just stayed quite. The minute they left my house my whole body broke down. I stood up and everything inside my body came out, everything!!! I was so so weak. Found out by my gp that my level of thyroxine was indeed to high so I was bought back down to 125mcg.
It took 3months for those symptoms to subside. My gp and I spoke on the phone again about 4 days ago. She said she thinks she'd like to lower my levo just a little bit. I mentioned when I was on that level before I became very ill with being freezing cold, sleeping and weak. She agreed and has now made another appointment with my 3rd endocrinologist (Oh lordy, you couldn't make this up could you). That appt is in April 2018.
....For many months now My legs are tingling and aching and feel numb. They really hurt! My knee caps really hurt. Lately in this very cold weather Im so hot in bed again. It started about 2 weeks ago but I thought it was just 'one of those things' again. So now, i'm wondering if my gp was right but I'm also scared of getting so ill like that again.
What more can I do? I've had the D102 gene test done. It states that I'm type 2 meaning a trial of T3 is advisable. Gp cant go by that either even though this test is suggested on the thyroid uk site. My tongue has been scalloped for about 4 year. My gp cant prescribe T3 but as I mentioned she has referred me to another endocrinologist.
Forgot to say. I SI B12 every other day. I take Iron daily (finally got a presc as had to cope alone at first). I take vit D daily and K2. My gp agrees I've done the right thing injecting B12 as I had so many neurological symptoms. Have just recently had bloods done and she says alls good in b12, iron, d. I haven't got the Thyroid results yet.
Any thoughts appreciated as I've lost my life.
Thanking you
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Flowers14
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I'm just waiting on a copy of all these results to come to me but they are sooooo slow. No diagnosis BUT 111 said I've robably got Hashimotos as my 'private' TPO result were high but no endo is doing anything, absolutely nothing!
I'm getting to see a 3rd endo beginning of April (more waiting, more sleeping). Yes I hear you about the thyroid tests. I've paid for them privately before. Its the only timee I can get any help lol.
Thanks for your thoughts and will post results sometime this week when i get them.
If you have had one TPO antibodies test result ever come back high then you know for definite that you have Hashimoto's also called autoimmune thyroid disease
Medics don't acknowledge or treat this in any way as they don't know how
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels can 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
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly.
Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Yes one time last year my Private thyroid test came back with high TPO. The out of hours gp said I should be seen byan endicronologist as I'm likely to have 'Hashimotos'. I couldn't get any gp to listen to me until 8 months later when my gp returned from maternity leave. She sent me to a endo and she was absolutely 'Useless'. My gp agreed and is sendimg me to another endo in April.
My iron is being watched (thanks). It was down to 15 and the lowest was 16, no wonder I couldn't lift my head off the pillow (Tut). Yes I do need to get FT3 and FT4 checked don't I. I loooked and its going to cost me £250.00, such a lot of money. Ill have to save for it as I must have it as I feel so so ill.
So with Hashimoto's would strongly suggest that you try strictly gluten free diet for at least 6 months. Ideally test antibodies before and after 6 months (while still gluten free)
Standard medical endocrinologist will not acknowledge Hashimoto's as they don't have any treatment to offer.
But as Hashimoto's patients we can make enormous progress treating low vitamins and avoiding trigger foods. Most common by far is gluten. Some react to casein in cows milk (not in sheep or goat). Some react to nightshades, potato, tomato, peppers and aubergine
Please post your vitamin and mineral results and say what you are supplementing with and the dose.
Also please post your thyroid test results, your latest and even those where you've had the dose changes (say what you were taking and what the dose was changed to). Please include the reference ranges so we can interpret the results (ranges vary from lab to lab).
Have you had thyroid antibodies tested - Thyroid Peroxidase (TPO) and Thyroglobulin (TG)?
Thanks for your reply. I've just called gp today to ask them to send me a copy of all of the results including my new Thyroid results. No, they never ever test my TPO (its ridiculous isn't it). As soon as I get them I will post. Last time I paid privately for my tpo and b12 etc test. I may have to again if something doesn't change. Will write soon.
Just checked with gp. Over the phone I got this info only. TSH 0.06 T4 20.02. My vit d is 173. I've checked my ferr, folate and B12 theyre all good.
They're posting them to me again as they said they sent them to me. So should arrive soon but theres no TPO only TSH and T4. Looks like i'm going to have to wait to April doesn't it? So much life left doing nothing I could just cry.
Flowers, you need the reference ranges as I said. We can't interpret results without them as they vary from lab to lab.
We know your TSH is very low, but your FT4 at 20.2 could be in range or it could be over range. The lab my surgery uses has a range of 7-17 so you would be over range with that. Other people's ranges posted on here have been 9-19, 12-22, etc, so we just don't know where your FT4 lies.
I've checked my ferr, folate and B12 theyre all good.
They will be optimal if they are:
B12 - top of the range, even 900-1000
Folate - at least half way through it's range
Ferritin - at least 70, depending on range maybe half way through, I've seen it said for females it should be 100-130.
If they don't reach these levels then post the results and suggestions can be made.
My vit d is 173
If that is NMOL/L then the recommended level, according to the Vit D Council, is 100-150 so you wont want to go higher so if supplementing you might want to very slightly reduce your dose. I keep mine at about 150.
You really need TPO and TG antibodies testing. You can do private home fingerprick tests with Medichecks or Blue Horizon for full thyroid panel and vitamins and minerals if you want those too.
Also, as you've mentioned the DIO2 test then you really need FT3 testing which will be included in the private home tests.
Gosh I've got candy floss for brains lately (I'm laughing). I forgot you really need the ranges. Ok I;ll wait till they arrive and post them. I didn't know that abot the D102 and FT3 so thanks. My next private test Ill make sure I get it done
I empathise with your situation. It is such a harsh experience. I went through a very similar experience 3 years ago.
I have struggled to get well. I lost all Faith in NHS doctors because I felt my GP let me down badly. I was shocked that after 25 years, doing ok on levothyroxine, I suddenly became very, very unwell. I had been over prescribed pain relief meds for prolapse discs and sciatica. During which time, levothyroxine was building to toxic levels in my blood (pharmacy and dermatology told me this). I thought I was going crazy. Phoning 111, seeing out of hours Dr etc... fortunately, all medics, apart from GP could see I was unwell, however, not many made the connection to thyroid. I did!
I cannot advise you, as I do not feel qualified. But, you do right, coming here, I was helped so much HU. I got strength to fight for myself.
To date, I have changed my GP practice, after 28 years, learnt that I was very over medicated levothyroxine, that I was autoimmune thyroid, and read Dr Peatfield book, become a patient of Dr Peatfield, trialed NDT..... and joined Thyroid UK support group.
At last, for first time ever, I have been seen by a lovely endocrinologist. My Faith in NHS is returning. I am feeling better than I have for a long time. I know this man is going to help me get very well. (He asked what is your first wish, I replied I need energy, he showed me he had written, she is exhausted, in my notes). He saw me, not just blood results. I have blood forms for the next 4 months, when I see him again, and a brand new treatment plan.
You will get there. I still follow advice HU and take supplements. I look after myself much better than before. I have built a good team of medics around me.
Get well soon. You know you have been very unwell. People will help you find your way. X
Wow, I'm still recovering from a bulging disc at c5 and c6. My gosh Incredible pain. I'm still disabled at present in my whole arm hand wrist fingers and shoulder. So I understand a bit where youve been. Immense pain and morphone didn't touch it.
Anyway, this group has helped me immensley thats why I pop by when things are going yampy, especially with thyroid. As you know its flipping hard to get help.
So glad you finally got a treatment plan. I'm hoping this 3rd endo is going to help this time. My gp is more onside now to so fingers crossed for me 'ey :). Just waiting for a copy of all my last bloods and then I;ll post them here.
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Hashimoto
T3 and muscle pain
Endo today..........
Still unwell..now saying low B12 ?
