Lowered dose ugh

[beanyjeany]

I have hashimoto's and for years have taken, in agreement with my GP, 125mcgs of thyroxine Monday to Friday, and 100mgs at the weekend, this dose keeps my bloods barely in reference range, but I could function, just about. I started to become tired at weekends so upped the dose to 125mcgs every day. However, I had a blood test two weeks ago and as the GP I saw for many years has retired, the new GP I saw has said I am overdosing on Thyroxine and he wants me to take a lower dose at weekends and Wednesdays too. I agreed and have to have a further blood test in three months. To say I feel awful is an understatement, pain in my ankles, wrists and I am pretty sure I am now developing two frozen shoulders which I have had before but not at the same time! All this has happened within two weeks. What should I do, I can't up the dose but I don't want to feel like this. Never had T3 tested. I have vitamin B12 deficiency too, which I know goes hand in hand with hypothyroidism, been on prescribed oral supplements for eighteen months not vegan or vegetarian and had a negative test for coeliacs. Had to beg for Gastric Parietal antibody test which was negative too. Considering going to a private Endo. Sorry for long post, feeling very negative today xx

[Sparklingsunshine]

 I would say first off to get your bloods tested privately, you definitely need your FT3 levels checking to see how well you are converting FT4 to FT3. The NHS rarely checks FT3 levels so many of us test privately. It's worth doing before you pay out for private Endo.

[beanyjeany in reply to Sparklingsunshine]

Thank you, and if t3 is low what should my GP then do?

[Sparklingsunshine in reply to beanyjeany]

If its low then by rights they should increase Levo but its worth mentioning that if you have low ferritin, folate, B12 or vitamin D levels then these can all affect the conversion of FT4 to FT3.

Problem is most NHS GP's use TSH levels to dose Levo and they really shouldn't. It's the levels of actual thyroid hormones that are the key. Before paying for private Endo it'd be worth testing not only your thyroid levels but checking the levels of the key nutrients listed above. If they are low then improving them might really help.

Hopefully one of the admin will be along to give you more information about private blood testing.

[Sparklingsunshine in reply to beanyjeany]

Lol as if by magic SD has arrived with her invaluable input

[SlowDragon Administrator]

First step is to get FULL thyroid and vitamin testing done

Insist GP test TSH, Ft4 and Ft3 before agreeing to any dose reduction

Plus essential to test vitamin D, folate and ferritin at least annually

What vitamin supplements are you currently taking apart from B12 injections

How often is B12 jab

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

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

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

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

Have you had coeliac blood test done

Are you on strictly gluten free diet

Looking at profile pic…..are you male

And approx age?

[beanyjeany in reply to SlowDragon]

Thank you. Not gluten free as tested negative to endomysial antibodies. Taking b12 oral supplements and have been for 18 months, last b12 blood test result was 400 which GP said was fine!

[SlowDragon Administrator in reply to beanyjeany]

Optimal vitamin levels are

Vitamin D at least over 80nmol and between 100-125nmol perhaps better

Serum B12 at least over 500

Folate and ferritin at least half way through range

Approx how much do you weigh in kilo

Are you male?

Low vitamin levels tend to lower TSH, because we need optimal vitamin levels for good conversion of levothyroxine (Ft4) to active hormone (Ft3)

Poor conversion results in high Ft4, low TSH and low Ft3

Low Ft3 tends to result in vitamin levels dropping further due to low stomach acid, results in poor nutrient absorption

Dosing by TSH is completely wrong

[SlowDragon Administrator]

looking at previous posts you have Hashimoto’s

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels 

Low vitamin levels 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. 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 

As you have already had negative coeliac test

Consider 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.

[Lulu2607]

Hi. I would be making an appointment with your GP and tell them how awful you feel on the new dose and your symptoms. Ask them to restore your old dose and mention Thyroid UK to show you know what you're talking about. At my surgery there's a good clinical pharmacist who seems to know more about thyroid than the GP and he's been happy to discuss my dose with me in the past. I don't know if that's a possibility for you?

[shaws Administrator]

If you've been diagnosed as having Pernicious Anaemia the usual treatment is a B12 injection every few months. The reason being that our stomach cannot absorb B12.

I have this condition but my GP has stated I can have as many B12 injections I feel I need, so am now having a monthly injection instead of every 3 months.

My mother also had this condition and regular B12 injections for years until her GP told her she needed no more B12 injections as her 'bloods' were now fine.

That statement by GP led to my Mother's early demise as she developed stomach cancer due to having no B12 injections.

[beanyjeany in reply to shaws]

I told the GP that as I wasn't vegan nor vegetarian what was the point in giving B12 oral supplements as my body obviously wasn't absorbing the b12 from a balanced diet, he said 'That's a very good question, b12 is absorbed by the small intestine, and sometimes if people have for instance coeliacs, they don't absorb it' I told him coeliacs test was negative and he just brushed it aside, said if i feel tired to come back and ask for the injections but to go to him, but not to another Dr he named, as she didn't like giving patients the b12 injections because of the nurses time!! Caring face of the NHS eh? x

[Sparklingsunshine in reply to beanyjeany]

Hi

I've asked about getting more frequent B12 jabs before, computer said no. If they are worried about wasting nurses time (difficult to see why this should be since the NHS surgeries aren't seeing anyone at the moment) then teach patients how to self inject, give us the stuff and let us do it at home.

Its not hard, plenty of people have to self inject for various conditions. There's a lot of stuff about self injecting on the Pernicious Anaemia board of Healthunlocked, if you're interested.

[jade_s in reply to beanyjeany]

Here's the link to the PA forum healthunlocked.com/pasoc we can help you self-source b12. First injection should be in a medical setting due to a rare but possible anaphylactic reaction. Wellness clinics and health spas are fine too.

[beanyjeany in reply to jade_s]

Thank you x

[shaws Administrator in reply to beanyjeany]

I had my injection this p.m. It was painless and I believe the (new) nurse has been well-trained. I had to wait was less than 5 minutes before my name was called.

[Lovecake]

You could try sublingual B12

Betteryou do a sublingual spray that is supposed to be very effective.