Increased stiffness & muscle pain/heart rate - chronic headache/neuralgia & tinnitus with hypercusis

[Toto88]

I have been battling for two years with unrelenting chronic occipital neuralgia & stiffness in the neck / shoulders. I have had hypothyroidism for more that 25 years & treated with levothyroxine 50 mcg. It was then upped to 75mcg & 50 mcg alternative days about 6 months ago but still I am no better. Recently I have had another thyroid test & again I’m hypothyroid. I am seeing a private Endocrinologist at the mo & 10 days ago upped my dose to 75 mcg daily. I am finding my heart is racing - muscle stiffness everywhere - increases head pain & nausea. I’m not sure if I should continue to see if everything settles down but I am really v v poorly. I can email the endocrinologist but I’m v sure he will say to try & continue for 4-6 wks which after that time I will then have the thyroid bloods done again. The endocrinologist wants to then try me on T3 once my TSH is below 1. Any advice would be most welcome x Thank you

[Lalatoot]

I found I could tolerate a larger dose of levo if I split the dose. This was suggested by my endo and I have a dose on waking and a dose at bedtime.

[jgelliss in reply to Lalatoot]

Kudos to your Dr. Your Dr really gets it. I'm glad to see that your Dr thinks out of the box. Splitting T4 is so very helpful for many. I'm splitting my T4 for many years and it works great.

[Toto88 in reply to jgelliss]

How can you split 75 mcg though because they are so small as it is & I take 50mcg plus 25mcg to make the dosage up ?

[Imaaan in reply to Toto88]

Hi,

Synthroid 75 mcg has a clear demarcation line that could be cut using a pill cutter. Another option is taking 25 mcg three times.

There was a time that I was taking half a pill of synthroid 75 and half a pill of synthroid 88. Both tablets had a line in the middle.

[jgelliss in reply to Toto88]

What I would do personally is to dose with the larger dose AM and the smaller dose PM.

Try either ways and see/feel how it works for you.

[SlowDragon Administrator]

You were extremely under medicated and definitely in need of dose increase

Have you had vitamin D, folate, ferritin and B12 levels tested

Likely very low as so under medicated

Also important to test thyroid antibodies

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

Ask GP to test vitamin levels

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)

If/when also on T3, make sure to take last third or quarter of daily 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?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[SlowDragon Administrator]

Previous post shows you have extremely low cortisol

This can make it extremely difficult to increase levothyroxine dose

What’s endocrinologist proposing to help improve low cortisol

[Toto88 in reply to SlowDragon]

I went to NHS endocrinology outpatients & they performed a blood test to see if I had Addisons Disease - the test result came back negative & these were forwarded onto my private Endocrinologist. I was given another cortisol test a few weeks later & the result came back normal this time ? The private Endocrinologist then asked for my thyroid TSH, T4 & T3 & the results are shown above as v low. The private Endocrinologist will not start me on T3 until my TSH is below one he has said. I have absolutely no energy - my head pain is nothing like a migraine & even though they think it’s occipital neuralgia - the nerve block does not wrk - pregablin doesn’t work - Botox doesn’t !! Every day is hell & I wouldn’t wish this pain on any living soul - I honestly don’t know how I’m still here & I just feel the NHS has completely let me down. I’m praying the levo will help in time but I don’t know anymore. I’m absolutely freezing cold 🥶 all the time - it feels like hyperthermia !! I have tinnitus & hypercusis daily - I even have to have a daily carer.

[Merlio18 in reply to Toto88]

You will start feeling better hopefully when you get the T3 I have similar symptoms and when I had t3 only my symptoms reduced then when I had to come off it all my symptoms came back. Keep resting and sleeping till the endo prescribes you t3. Also get a private cortisol salvia test and a genetic test to see if you can convert properly if you haven't done already. As you might need to be on T3 only. When I managed to trail T3 only it gave me optimal life back, you can also address other areas of your body and go to see a Naturopath to help balance your body and help with conversion of t4-t3 as I have hormonal balances and high cortisol too which a private endo won't really address. Also you maybe feel better on NDT which you can also self source. Good luck.

[SlowDragon Administrator in reply to Toto88]

Have you had vitamin D, folate, ferritin and B12 tested

Getting these vitamins to GOOD levels helps tolerate levothyroxine and improves symptoms

[DebTex in reply to Toto88]

I’m so sorry that you have so much going on! I can’t help you any in the thyroid department, I need a blood test done on mine too as I have been freezing all winter also.

I have had tinnitus for a long time and at one time I had Hyperacusis for about a month from very loud noise exposure, and very thankfully it toned down and went away! That month was a living hell! Have you had Hyperacusis for very long? No one could even begin to know what it’s like to hear things extremely loud and sometimes distorted unless they have had it. I’m hoping yours is not that bad and that it and all the rest of your problems get resolved!

Have you had the Hyperacusis for very long?

[Toto88 in reply to DebTex]

Yes I’ve had the tinnitus & hypercusis for two years since I went down hill ! It is unbearable & I have tried to seclude myself but even outside noises are v loud ! I’ve seen ENT & they are wanting me to start sound therapy for it but I can’t even get out of bed let alone that. I came off a antidepressant venaflaxine & for the first couple of months was v well then I got the problem - even going back on the drug did not resolve it so again months later I came off it completely. I have read that undermedicated hypo can cause hearing problems so I’m praying it will resolve once I’m fully medicated.

[DebTex in reply to Toto88]

Oh geez, I’m so sorry! I guess there are different ways to get Hyperacusis! And like you said, hopefully it will get resolved once you get your thyroid meds where they need to be!

I can remember lying in bed at night trying to go to sleep having Hyperacusis and hearing all the night times little sounds in the house amplified and I could even hear birds flying over the house that I couldn’t normally hear! It was a nightmare!

Sending healing vibes your way!!! Hang in there and don’t give up!!

[SlowDragon Administrator]

When left on far too low a dose levothyroxine for too long, adrenals become exhausted. They will improve as dose levothyroxine is increased SLOWLY upwards

Initially to compensate for lack of thyroid hormones adrenals make high cortisol levels. But this high cortisol output can’t be sustained and then cortisol levels drop

Daily vitamin C can help support adrenals

Plus make sure to eat plenty salt

An adrenal cocktail may help

stopthethyroidmadness.com/a...

Suggest you keep weekly note of how you’re feeling and activity levels. It can be difficult to appreciate tiny improvements on day to day basis. Useful to keep notes so that you can look back and see you are improving

Tolerating dose increases can be tough. Common to feel much worse roughly 3-7 weeks after each dose increase, before slowly improving

As your endocrinologist says......It’s important to get levothyroxine dose increased up slowly, before even considering adding T3

TSH under 1 and Ft4 up in top third of range. But dose will need to be increased slowly. Sometimes better to increase in 12.5mcg steps if find 25mcg increase too much to tolerance

[SlowDragon Administrator]

Presumably you have Hashimoto’s - Autoimmune thyroid disease diagnosed by high thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease. Autoimmune thyroid disease often runs in families

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 with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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

healthcheckshop.co.uk/store...?

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 gluten free diet for 3-6 months. If no noticeable improvement then 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

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Why gluten intolerance can upset cortisol levels

kalishinstitute.com/blog/gl...

[Toto88 in reply to SlowDragon]

I had a cealiac test done but was found not to have it. When My antibodies are tested they have never come back abnormal - I have had hypothyroidism since v young though & I was at the stage of nearly going into a coma b4 they found I was !! I would sleep 19 hrs a day ! Even omitted into hospital back then they thought I was depressed & put into a mental health unit which I was in for 2 wks !! Asleep most of the day !! I have had a terrible experience with the NHS !! Also I have a T6/7 herniated disc & stomach hiatus hernia - I take a antacid at bed time so it doesn’t interact with my morning levo. This I realise could be causing leaky gut & other problems but they no longer do the op on the NHS & I can not afford the private operation. Nobody unless you have thyroid problems have any idea how it affects you & it’s about time GPS are stopped with treating patients with the condition. The day the medical board addresses this problem & also treats symptomatic patients who still are v unwell & in so called ‘normal range’ the better we will be. Finding Thyroid UK has been my only lifeline & its v sad that we have to resort to joining these invaluable sites so that we can educate & spk to others who so kindly try & help. Thank you again for being there x

[SlowDragon Administrator in reply to Toto88]

All I can say is that negative coeliac test doesn’t mean you are not gluten intolerant

I had two negative coeliac blood tests, 20 years apart. Both negative

Zero gut symptoms. But extremely unwell on levothyroxine, including adrenal exhaustion

Turned out to be severely gluten intolerant (leaky gut)

Confirmed by endoscopy

Strictly gluten free since 2016

Spent year improving dire vitamin levels

T3 finally prescribed alongside levothyroxine in 2017

Now fully recovered. More on my profile

Roughly where in the U.K. are you

You need adrenal, thyroid specialist endocrinologist

[damehypo]

I found adding 1 or two drops of lugols iodine in warm water once every two days helps me loads...I do not get freezng cold now......it improved other things too. start low, but do a test on your skin on your foot first, see if you get a reactio,of ot start at i drop in a glass of water every other day and increase or decrease as you feel better (cold/temp wise) all the very best. I bought my crows lugols iodine off amazon.

[Denabennett]

Hi, I know the feeling all to well sweetie I would suggest you do up on your dosage I've been on 100mg for years and it works wonders I can manage my weight ,recently A new doctor took me off of it and it was the worst thing that he could have done to me!!! he put me on Armor(pig Thyroid) it made me worse!! nite sweats I could not sleep and on top of that he over medicated me,needless to say my original Dr put me back on levo 100mg and i'm back to normal I hope you find something that works

[jamesal0]

Your TSH would suggest you are undermedicated but everything else suggests over. As an experiment go off Levo for 2-3 days. If you feel better you are over medicated. If you feel worse you are under. Myself I cant run a good TSH on Levo without getting a migraine and al-sorts of tingles and weirdness's. 7-8 years ago I changed to Natural Dedicated Thyroid (NDT). For me its alot better. But it's difficult to get, expensive and fiddly to use. You cant just take the same dose day in and day out - because it has a active component (T3) - you take what you need depending on your activity and environmental stuff. You probably wont get a TST that will make your GP happy - but you will feel 90% normal. You will also need some B12, Iron, D3 but dont go crazy chasing vitamins - there alot of marketing bull in the vitamin industry.

J