Some Questions.

[Sparklingsunshine]

Hi

Well I wrote out a ling message earlier and then my tablet crashed and I lost the will to live but I'm really interested in getting some answers please.

How soon does TSH go down and the thyroid hormones go up whilst on Levo. My TSH was 6.2 in early October and my dose increased to 125mcg. Next bloods early January. I'm curious about what to expect then, I guess it's very individual though.

The other question which is more pertinent is are some people more sensitive to fluctuating thyroid levels than others? My ongoing itching episodes are well publicised here on the forum.

I came off Levo for a week to see if it made a difference and felt awful, weak, shaky, no energy at all, breathless. Went back on it and the itching/pins and needles, tingling continued.

Antihistamines haven't worked and my GP got advice from the Endos who suggested coming off Levo for 6 weeks. I lasted for 3 days and really started to feel ill. Same symptoms, fatigue, weakness, legs feel like jelly, breathless, bit nauseous. I literally felt like I was glued to the sofa.

It's really most unlike me. I've never ever felt as bad as this even when my fibromyalgia has been at its worst. I'm normally quite energetic. It's not all the time either, I'm having times when I feel OK and then times when I feel terrible.

I'm confused about why after only a few days I'm getting such symptoms. I thought Levo was a storage hormone and I've been on it for 18 months. It's not like I'm newly diagnosed. I didn't realise it could affect people so soon. My TSH at diagnosis was 7.1 with T4 of 11. So not desperately hypo. Certainly nowhere near as bad as some members.

I think I'm worried that I'm blaming my thyroid issue and it actually might be something else. I'm on the Levo now again. I don't have Hashimotos. Any advice gratefully received.

[SlowDragon Administrator]

Looking through previous posts I couldn’t see any thyroid antibodies results or vitamin results

Many Hashimoto’s patients only have high TG antibodies

Have you had BOTH TG and TPO antibodies tested?

20% of Hashimoto’s patients never have high thyroid antibodies

Have you had ultrasound scan of thyroid

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

TSH 6.2 range 0.27 to 4.2

FT4 12.2 range 12.0 to 22

FT3 3.6 range 3.1 to 6.8

Most recent thyroid results from a month ago show you were under medicated

Have you had coeliac blood test yet

[Sparklingsunshine in reply to SlowDragon]

Hi folate was tested October 4.92 which is low so taking methylofolate, ferritin very good at 134. Had full iron panel in October from GP due to itching. They didn't test vitamin D but I've got historical deficiency so always take 4000 iu. I got thyroid antibodies tested on NHS last year and it was negative.

I have PA so they don't test B12 as it always comes back high due to B12 injections. I take magnesium complex, B12 spray and B complex. No coeliac but am gluten free anyway.

[SlowDragon Administrator in reply to Sparklingsunshine]

I got thyroid antibodies tested on NHS last year and it was negative.

So if TPO antibodies were negative, it’s highly unlikely NHS tested TG antibodies

Are you sure both TPO and TG antibodies were tested ?

TG antibodies can be slightly raised due to PA

See info here

healthline.com/health/antit...

If you have PA that’s autoimmune,so it’s virtually guaranteed that hypothyroidism will be autoimmune too

Plus gluten free diet and Hashimoto’s go together

On gluten free diet, TPO antibodies are often low and within range

Have you had ultrasound scan, can help diagnose Hashimoto’s, with negative antibodies

[Sparklingsunshine in reply to SlowDragon]

No I just got the usual NHS antibody test which was negative and had to push for it, despite being told by my GP that they would test for it at second blood tests after starting Levo. I've never had an ultrasound scan on thyroid.

[SlowDragon Administrator in reply to Sparklingsunshine]

So you need to test BOTH TPO and TG antibodies via private testing

Suggest you get FULL Thyroid and vitamin testing done via Medichecks or Blue horizon in 6-8 weeks after latest dose change

[Sparklingsunshine in reply to SlowDragon]

Hi

I've dug through old email and found my Blue Horizon test from 2016 that I had done. Even then I think I was starting to see indicators all was not well but as they were in range nothing would be done so I didn't pursue it with GP.

Thyroid Function

TSH 4.14 0.27 - 4.20 mIU/L

T4 Total 77.3 64.5 - 142.0 nmol/L

Free T4 13.44 12 - 22 pmol/L

Free T3 4.43 3.1 - 6.8 pmol/L

Immunology

Anti-Thyroidperoxidase abs 23.4 <34 kIU/L

Anti-Thyroglobulin Abs 26.7 <115 k

Do you think its worth testing antibodies again?

[SlowDragon Administrator in reply to Sparklingsunshine]

Possibly yes

TSH right at top of range

TSH over 3 suggests you were hypothyroid

Median TSH graph of healthy population

healthunlocked.com/thyroidu...

TSH daily variation

healthunlocked.com/thyroidu...

important when you test TSH ....

researchgate.net/publicatio...

“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

[DippyDame]

You may find this article of interest -

"Pure T3 Thyroid and Stories of Recovery from Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: An Overview."

healthrising.org/blog/2019/...

[nightingale-56 in reply to DippyDame]

That article is very enlightening DippyDame , with many of our favourite Doctors. Thank you for posting.

[JAmanda]

If I were you I’d order blood tests privately for six weeks after you started new dose. That’s enough time to see if it’s worked or if you need another increase. Others will say 8 weeks. I’d get plenty of meds in and be prepared to self increase dose. I am not a patient person. Still it’s taken me over three years to get my levels high enough to have the energy to go out in the evening.

[Sparklingsunshine in reply to JAmanda]

Hi

I hear a lot about self testing but I tested my thyroid at home a few years ago as I've been convinced I've had hypo for years. It was a disaster, couldn't get any blood out of my fingers at all. Had to stab myself in the crook of my arm then there was too much blood 😁

Fortunately my son was a HCA at the time and we managed on the last attempt as he'd had some training in caring for diabetic patients but it was a real faff. That was with Blue Horizon. I'm I'm impressed anyone manages tbh. My son has since moved out and I'm not sure I'd manage solo.

[SlowDragon Administrator in reply to Sparklingsunshine]

You can pay extra for private blood draw if order Medichecks or Blue horizon

[Catfink]

I find a good way to get my blood going for a finger prick test is to run some hand-hot water in the sink. Wash my hands so they’re warm.. then go up and down the stairs five times so i’m a bit tired.. go back and put my hands in the warm water, dry them, and then do the finger prick. I know it sounds a bit of a faff, but in real life it’s ok. Seems to make it work better.

[tattybogle]

i've been taking levo 18 yrs. and on several occasions over the years i have either been stuck in a remote location without anymore tablets, or deliberately stopped taking it for a dew days as a experiment to see effect on blood tests. ... i can tell you that your experience of feeling awful after only a few days is exactly what would happen to me.

And it's not just my subjective opinion of 'how i feel'.. anyone who works/lives with me and knows me well, would not consider letting me drive the truck if i'd not had any levo the day before.... it's apparent to everyone there's 'something wrong here' .. even after just 1 day of not having any.

A curious thing always happens too .. if i forget a dose in the morning, i wouldn't notice anything different till about 2 pm, but that afternoon i'd be feeling /acting a bit 'wired' ,talking too much.. which now i can recognise it , feels a bit like 'living on just adrenaline' .. this feeling has become my cue to think "Did i take my tablet this morning ?"

Like you , according to bloods i wasn't very hypo at diagnosis, my TSH was only 6.8 , and i don't know about fT4 , but TT4 was 91 [65-155] ..... but i felt bloody awful and had to wear hats and thermal leggings under my clothes indoors , (in may ! )

but fortunately (for my sanity) they found TPOab's of >3000 (0-50),

so i've have never really had to deal with any nagging doubt about "is my thyroid really the problem here ?"

P.s It's very difficult to be certain that you don't have autoimmune thyroid disease (hashi's or ords ).. there are documented cases of people without any thyroid autoantibodies who do have clearly visible thyroid damage , of the type characteristic of autoimmune thyroid disease (it's something to do with a pattern that looks like the markings on a giraffe , but i forget the exact details)

Also .. i bet the NHS only tested your TPOab , not TGab.

*TPOab = Thyroid Peroxidase antibodies / TGab = Thyroglobulin antibodies

[Sparklingsunshine in reply to tattybogle]

Hi I have PA so was well prepared for eventual NHS antibody test to be positive but it wasn't, but as you say its only the TPO ab test they run and I've not tested privately. I did pay out for a Blue Horizon thyroid test a few years ago, can't remember if that tested antibodies but it was all OK. But then that was around 5 years ago now.

Have had a feeling of something being stuck in my throat near my thyroid quite a lot recently. Going to mention it to GP on Wednesday.

[SlowDragon Administrator in reply to tattybogle]

if i forget a dose in the morning, i wouldn't notice anything different till about 2 pm, but that afternoon i'd be feeling /acting a bit 'wired' ,talking too much.. which now i can recognise it , feels a bit like 'living on just adrenaline' .. this feeling has become my cue to think "Did i take my tablet this morning ?"

Like you , according to bloods i wasn't very hypo at diagnosis, my TSH was only 6.8 , and i don't know about fT4 , but TT4 was 91 [65-155] ..... but i felt bloody awful and had to wear hats and thermal leggings under my clothes indoors , (in may ! )

This is virtually identical to my experience ….even after 25 years on 125mcg levothyroxine……if I (very occasionally) forgot my levothyroxine in morning by mid afternoon I would be aware that I had missed it

This is much improved now I split my levothyroxine taking am and pm …..and especially now on T3 as well

Diagnosed with TSH of 8 and both antibodies off the scale (in the many 1000’s) …..I was wearing 5-6 layers even in summer and sleeping under 3 duvets ….looking back …I had been getting increasingly cold over preceding 3-5 years before diagnosis but had just accepted that as “normal “

[tattybogle in reply to SlowDragon]

funny how many similarities re. lowish TSH / silly antibody levels / level of symptoms . i do wish they'd do more research based on those kind of groupings. they might learn something . It took many years before i was tuned into my body enough to realise 'i'd forgotten' on the same day... for the first decade the most obvious consequence of 'forgetting a day' would be that i'd inevitably forget the next day too !

I spit it now too ,, and 'forgetting' rarely happens now cos my life is way more routine.

lol .. 3 duvets!

before diagnosis i was sleeping on 3 layers of sheepskins and underneath a bearskin rug, but because we had a massive woodburner in a very well insulated yurt i wasn't often able to gauge if i was colder than anyone else .. cos we were all far too hot most of the time... but when we went to see people in houses i thought how do you lot live in this chilly house ?

my main problem was i couldn't walk up the hill anymore .. which was unfortunate cos we lived at the bottom and the road was at the top.

[shaws]

This statement is shocking:-

"Antihistamines haven't worked and my GP got advice from the Endos who suggested coming off Levo for 6 weeks. "

How have the 'specialists' (supposed to be trained and have a qualification in thyroid hormones) make stupid comments advising the patient to not take thyroid hormones for six weeks.

It would seem today that a few posts lie at the foot of endocrinologists who're passing over patients who've been given no advice or information so they can relieve the clinical symptoms they're suffering from.

I think the reason for not enquiring about clinical symptoms is because they know absolutely none at all and neither how disabling the symptoms can be for the patient.

No wonder many on this forum turn their backs on the professionals and 'go it alone' with the help/support on this forum.

[Sparklingsunshine in reply to shaws]

Hi I'm not a doctor although I feel I have a good insight and knowledge about my own issues, 16 years of fibromyalgia has led me to read up on my condition. I also have joint hypermobility/EDS so have had quite a degree of ill health. Having chronic conditions that can't be cured means you are often "parked" by the NHS and left to get on with it.

As they aren't easily treated, managed, let alone diagnosed I've always tried to be my own advocate and have often felt like I know more than a lot of doctors do.

I must admit when my GP read that out from the Endos I was shocked and felt really let down. It seemed really poor advice. Even I know thyroid hormones aren't something you switch on and off like a tap.

[SlowDragon Administrator in reply to Sparklingsunshine]

So as you have joint hypermobility/EDS

Again EDS often linked with autoimmune thyroid disease (hashimoto’s)

[shaws in reply to Sparklingsunshine]

TUK had a brilliant doctor (deceased) who was an Adviser. He was a doctor/scientist/expert in the use of T3 for those patients who were 'resistant' and the following link may be of help/knowledge. He took T3 himself (in the middle of the night so that nothing interfered at all with T3's uptake). His name was Dr John Lowe.

healthrising.org/blog/2019/...

He would never prescribe levothyroxine - only NDTs or T3 for those patients who were resistant.

The other links might also be helpful too.

[Sparklingsunshine in reply to shaws]

Hi I have heard of him, what a shame he's no longer with us and what a shame so few other doctors emulate his knowledge and experience. Thanks.

[vocalEK]

I had itching all over after I had chemotherapy. Turned out to be neuropathy. I now take gabapentin 3 times a day. It pretty much works. You aren't diabetic are you? Did you have chemo?

[Sparklingsunshine in reply to vocalEK]

Hi no and no, do have fibromyalgia though which can cause peripheral neuropathy/pins and needles. I remember trying gabapebtin years ago but it gave me horrible stomach upsets so I didn't continue with it.