Levo doses and side effects

[Stevensnj87]

Hi everyone,

I've had hypothyroidism (Hashimotos) for several years now and never felt 'well' that whole time, but at times have been able to cope and others (like now) absolutely can't. It seems to be constant and I wanted some advice/thoughts from what seems to be a very knowledgeable group who can relate!

I was on 200mcg Levothyroxine until around September last year when my dose was increased to 225mcg because I told them how unwell I was still feeling (achey, exhausted). Since the beginning of December I have felt awful - really anxious as in constantly on the verge of a panic attack, exhausted, tight chest, dizzy and weak. In January I ended up going to A&E because I was convinced it was something life-threatening but was given the all clear and sent home.

When I have been given Teva brand in the past this gave me similar symptoms and I realised that recently I'd been getting Accord rather than my previous Mercury Pharma so specified that I want to go back to MP/Eltroxin in case the tablets were the problem.

For the past 4 weeks I've been on Eltroxin and although the constant panic has subsided (thank god) I have a feeling of my throat closing up/feeling restricted and sore as well as really bad muscle pain - in my back, neck, shoulders particularly. If I carry a backpack I'm in agony. My chest is still tight and feels restricted, I feel breathless and exhausted, nauseous and have pins and needles now too.

I am trying to get a GP appointment but don't hold out much hope - I have other health conditions so am Type 1 diabetic and also had an autoimmune blood disorder called Aplastic Anaemia which was treated with a stem cell transplant 4 years ago. This means GPs write off a lot of things as just 'how you are'.

I will also try to see my endocrinologist (I say 'my', I've seen him once and he was only interested in my diabetes...) I am open to looking elsewhere/paying private if needed. But in the meantime...

I paid for tests via Medichecks as I have seen recommended on this forum which I will post results of below. They show high T4 but low T3 so am I right in thinking that no matter how much Levo I am pumping into my system I won't feel better? And are these symptoms side effects of taking a higher dose? When I was on 200mcg I still felt unwell but not to this degree and I could still function - it's a real struggle atm.

I'm debating cutting back to 200mcg but wonder if it is too soon to be sure of the effects of the brand change. Could my body still be getting used to the adjustment back to Eltroxin/MP? Its been 4 weeks so not sure if that's enough time to adjust and settle. I'm also wondering if it's worth having a blood test again before reducing the dose although GP will probably only test TSH. Also I'm just desperate to feel better!

Any thoughts would be greatly appreciated and thanks for reading this long long post!

Results - 24/1/23.

Blood taken 24 hours after last dose of Levo at 9am

TSH 1.71 (0.27-4.2)

FT3 4.01 (3.1-6.8)

FT4 24.8 (12-22)

Thyroglobulin antibodies 500 IU/ml (<115)

Thyroid peridoxase antibodies 473 IU/ml (<34)

Vitamin B12 Active - 114 pmol/L (37.5-150)

Vitamin D - 80 nmol/L (50-200)

Folate - Serum - 9.33 ug/L (>3.89)

Ferritin - 154 ug/L (13-150)

(Ferritin slightly high due to residual build up from blood transfusions several years ago to treat blood disorder so no concern)

-----

Results from 24/9/22 (on Levo 200mcg)

TSH 5.45 (0.27-4.20)

T4 20.8 (10.8-25.5)

[SlowDragon Ambassador]

Welcome to the forum

First point is high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Type one diabetes also autoimmune

Have you had coeliac blood test?

Poor gut function 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. 

 A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 may 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 

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...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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

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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

Both dairy and gluten are considered inflammatory foods

[Stevensnj87 in reply to SlowDragon]

Hi,

Thanks for reply. I was tested for coeliac last year and all clear but I am considering trying gluten free - I'm already dairy free and didn't want to further restrict my diet but since it seems to be beneficial to many it's definitely worth a shot.

[SlowDragon Ambassador in reply to Stevensnj87]

personally I would think that is next step to try strictly gluten free ….you might be amazed….thousands of us are astonished at the difference

Loads of different gluten free choices these days …..just like non dairy

[SlowDragon Ambassador]

Ferritin - 154 ug/L (13-150) (Ferritin slightly high due to residual build up from blood transfusions several years ago to treat blood disorder so no concern)

Have you test full iron panel test to see if iron is ok

Ferritin can be falsely high due to inflammation of Hashimoto’s

Request GP do full iron panel test

Or

Medichecks iron panel test 

medichecks.com/products/iro...

Vitamin B12 Active - 114 pmol/L (37.5-150)

Vitamin D - 80 nmol/L (50-200)

Folate - Serum - 9.33 ug/L (>3.89)

Are these naturally at good levels or do you supplement

[SlowDragon Ambassador]

TSH 1.71 (0.27-4.2)

FT3 4.01 (3.1-6.8)

FT4 24.8 (12-22)

4 weeks is really too soon to test after changing brand of levothyroxine

Ideally it’s at least 6-8 weeks after any dose change or brand change

If you can bear to wait another 4 weeks then retest just TSH, Ft4 and Ft3

If Ft4 is still over range …..and Ft3 still low then likely to need small reduction in levothyroxine and addition of T3 prescribed alongside levothyroxine

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3

[e-mail]

Meanwhile trial gluten free diet

[Stevensnj87]

Hi, good idea about the iron panel - will ask the GP or Haemotology team to test this. Vitamins are naturally at good levels luckily.

[SlowDragon Ambassador in reply to Stevensnj87]

High B12 could be deceiving, especially with pins and needles

You could have Paradoxical B12 deficiency 

b12oils.com/paradoxical.htm...

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

Suggest you consider trying adding a daily vitamin B complex

[SlowDragon Ambassador]

Some of us can’t tolerate Ft4 over range at all

You might also consider getting Dio2 gene test done while waiting

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

Assuming you test positive for Dio2 it can help get T3 prescribed on NHS…..though likely to need to see endocrinologist privately initially to get T3 …

A) so few NHS endocrinologist are thyroid specialists

B) waiting list can be over a year

Some on the list are private and NHS…..so initial consultation privately

[Stevensnj87 in reply to SlowDragon]

I suspect I am one of these people, just based on how much worse I have felt the past few months. However I didn't feel amazing before which is what makes it so hard to judge.

[SlowDragon Ambassador in reply to Stevensnj87]

many years ago when I increased dose levothyroxine so Ft4 was just over range…..I stopped sleeping completely….was horrendous

You might need to fine tune dose levothyroxine down a little…..perhaps reducing by 12.5mcg twice week

But first try to hang on and retest at 8 weeks before considering changing dose

[Stevensnj87 in reply to SlowDragon]

That's interesting because I feel the opposite - like I could sleep for days but never feel rested. Literally always exhausted. Could that also happen with high ft4?

Unsure if it is that which is causing problems or not tolerating Levo very well or something else entirely..

[SlowDragon Ambassador in reply to Stevensnj87]

FT3: 4.01 pmol/l (Range 3.1 - 6.8) 24.59%

Ft3 is extremely low

Most people when adequately treated will need Ft3 at least over 5.5…..often over 6

So you would expect lots of hypo symptoms

Also likely high cholesterol

[Stevensnj87]

Thank you, this is all really helpful - I will try and hold off before getting re-tested as I did suspect it was too soon. I am hoping that these symptoms will settle and if not I will follow these next steps. Just such a frustrating process when you feel so rubbish but can't always be shortcuts I suppose!

[McPammy]

I had very high T4 results and very low T3 results. I eventually found out I am a very poor converter of T4 levothyroxine to the most important hormone T3. With very low T3 you’ll definitely be struggling. The NHS was absolutely rubbish and eventually I went private. I wish I’d done that much sooner but at that point I thought the NHS would help me. They didn’t. TUK have a list of pro T3 private endocrinologists you can chose from. There is also a private test you can do through Regenerous Laboratories for the faulty DIO2 gene. If positive this confirms you struggle with converting levothyroxine T4 to T3. I too spent many years struggling on levothyroxine never knowing why. I do now as mine came back positive. Since introducing T3 medication liothyronine my life has changed enormously for the better.

[shaws]

For me, levothyroxine caused me to feel worse and have additional symptoms. I am aware thousands seem to be fine on levo but not me.

My health only recovered when I was prescribed liothyronine (T3) alone. I also followed Dr John Lowe's advice. He had an accident that caused his death but his website is till up/running as his widow is dealing with it. He was also a scientist and expert on the use of T3 (liothyronine).

drlowe.com/thyroidscience/

[Vileplume in reply to shaws]

Hey shaws, I appreciate your posts. Do you find that even small doses of T4 cause you to get worse? For example, adding a little bit of T4 to your T3. (I don't mean to derail your thread, OP)

[shaws in reply to Vileplume]

I just can not tolerate T4 at all. T4 is an inactive hormone and supposed to convert to T3 - the active hormone. I was unable to do so.

I was awake in the middle of the night with severe palpitations and connected to the local hospital to record the symptoms but they couldn't give an explanation..

Since being on T3 alone my health is completely normal. It is also the active hormone that enable us to function as normal, The brain and heart have the most T3 receptor cells,