Hi
I am having trouble manage my Hashimoto Disease with the NHS and want to find private help. Should I seek out a private GP or endocrinologist? I live in SW10, London. I’d like to find someone who understands this disease and is open minded. Can you DM me some names please? What’s the difference between a GP and an endocrinologist? Can both write you a scrip?
Personally, I'd save my money and just read everything you can on this forum.
I was diagnosed in June and I'm far from an expert but I feel confident about the condition now, simply from reading threads on here everyday.
Have you had your 25mcg increase?
Have you had ferritin, folate, vit D, and B12 tested?
Are you strictly gluten free?
Before you even consider paying to see a doctor, I'd suggest getting your vitamins optimal, and trialling gluten free, and getting your TSH to around 1 or under.
I am struggling to get my NHS doctor to give me a prescription renewal with the 25mcg increase...So feel frustrated and on my own. I just got a missed call discussing my results and no mention of more meds.
How seriously must I take the gluten free advice? It’s such a hard road to go down and I’m super reluctant.
Can you see a different GP? Maybe even move practices if necessary.
When all 4 vitamins are optimal your body can then use the levo you take efficiently.
SlowDragon has more information but I think 80% of those with hypothyroidism suffer with gluten intolerance which causes leaky gut which in turn makes it very difficult for your body to maintain vitamin levels.
It's generally recommended on here to go strictly gluten free for 6 months, if you see no improvement after that introduce it back and see if your symptoms get worse.
I also put off going GF because I couldn't wrap my head around it, but for me it's made such a difference that it's easy to stick to it.
Ok. Let me give all of this a think...but are there doctors in SOUTH WEST London who are better to approach?
Undoubtedly. You could try googling your local practices, some have write ups of the GPs and what their interests or expertise is. You might find one with a special interest in thyroid. That would be a good start.
Or you can email thyroid UK and ask for the list of thyroid friendly endocrinologists. tukadmin@thyroiduk.org
There is also NHS guidance that suggests your TSH should be around 1. It's on the site somewhere, I'll see if I can find it for you.
healthunlocked.com/thyroidu...
Seaside Susie's response here might be of interest to you.
Previous post shows you are in need of 25mcg dose increase in levothyroxine up to 75mcg
healthunlocked.com/thyroidu...
Make appointment with GP
Anyone on levothyroxine MUST have dose increased slowly upwards in 25mcg steps until TSH is under 2
Many people will have TSH well under one when adequately treated
Essential to regularly retest vitamin D, folate, ferritin and B12
Request these are tested now
TSH should be under 2 as a maximum....many need TSH less than 2
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Email Thyroid UK for list of recommend thyroid specialist endocrinologists and doctors ...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Recent results
Serum free T4 level (XaERr) - 12.5 pmol/L (range: 9.0-23.0)
Serum TSH level (XaELV) - 6.95mU/L (range: 0.3 - 4.2)
Antibody test (XabCy) - 378.26 iU/mL (range: 0.0 - 5.0)
These CLEARLY show you need dose increase in levothyroxine
GP should have contacted you to increase dose
Which brand of levothyroxine are you currently taking
Likely to have low vitamin levels with such high TSH
Request vitamin D, folate, ferritin and B12 testing and coeliac test too
I just got a voice mail from the doc and no talk about increasing my Levo (ALMUS brand) at all. That's my I feel frustrated by the local NHS doc. I have just sent in my bloods to get my vitamin D, folate, ferritin and B12 tested. Never though of getting coeliac test done. But will look into this too.
KBA22
Is the TSH level of 6.95mU/L (range: 0.3 - 4.2) from your latest test?
If your current TSH level is over range then remind your GP of the NICE guidance for treating hypothyroidism, particularly
1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
Link to NICE guidance:
nice.org.uk/guidance/ng145/...
Probably not much point in seeing someone privately. If they agree that your Levo dose needs raising and they write to your GP there's no guarantee that the GP will do so and you may then end up paying for a private prescription. Better to try and get your GP to follow the NICE guidance.
Also, SlowDragon has given you a link above to GPOnline which suggests TSH should be between 0.5-2.0 and OforOnward has given you a link above to my post yesterday quoting Dr Toft's article, this is all useful information to discuss with your GP as support for a dose increase.
These are my December 2020 results
Serum free T4 level (XaERr) - 14.2 pmol/L (range: 9.0-23.0)
Serum TSH level (XaELV) - 5.85 mU/L (range: 0.3 - 4.2)
Serum TSH level (XaELV) - 5.85 mU/L (range: 0.3 - 4.2)
KBA22
So in December your GP result showed TSH over range. Everything I said in my previous reply applies here. Your GP is being negligent if he doesn't increase your dose of Levo. Request an increase using the information given. If refused make a formal complaint to the Practice Manager that your GP is being negligent by ignoring the treatment guidelines.
Just wanted to say a BIG thank you to all the people who replied to my post. Good news!! I have now had my prescription renewed and can pick it up today and as per Slow Dragon's advice, I have gone up from 50 to 75mcg. This experience has shown me how important it is to really advocate for yourself to get what you need. This site has been invaluable for me. Thank you so much!
Brilliant
Make sure to get same brand of levothyroxine as previously
Many people find Levothyroxine brands are not interchangeable.
Almus is Accord brand
Accord to NOT make 25mcg tablets
You will need prescription to be for 50mcg tablets and cut in half
Alternatively, you might consider Mercury Pharma brand who make 25mcg tablets
Definitely avoid Teva (also Northstar 25mcg is Teva)
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/medications-f...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Hi
Just wanted to ask a quick question. I got my meds.
1. If I take in the evening, do I need to take it at least an hour after not drinking and eating?
2. I have 25 mcg of Mercury Pharma + 50 mcg of Almus. I was using Almus/Accord when on a 50 mcg prescription. Is it ok to take two brands together? While using Almus, I had no problems with it.
Thank you.
Mercury Pharma and accord are the most easily tolerated
See how you get on
Accord don’t make 25mcg tablets.
If you were going to only take Accord, you need an increased number of 50mcg tablets prescribed and cut a 50mcg tablet in half to get 25mcg daily
Next step is to get vitamin D tested and coeliac blood test
vitamin D available as separate test via MMH (NHS service)
Or alternative Vitamin D NHS postal kit - very easy - four drops of blood
Looking for vitamin D to be at least over 80nmol and around 100nmol maybe better
If result is under 25nmol GP should prescribe LOADING DOSE - 300,000iu in total over 6-8 weeks
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Taking too much vitamin D is not a good idea
chriskresser.com/vitamin-d-...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
2 good videos on magnesium
Only make one change at a time
So first step is to get started on higher dose levothyroxine. Bloods should be retested 6-8 weeks later
Get vitamin D levels tested now
Come back with new post once you get results
Likely to need to supplement
Starting with adding vitamin D, then magnesium
Consider getting ferritin,, folate and B12 tested on 8 weeks time
Meanwhile getting coeliac blood test. Likely negative result, but if test is positive you will normally need endoscopy while still eating gluten. Though with pandemic they might say will do endoscopy a year later after going gluten free
Don’t start gluten free diet yet.....wait to get vitamin D results back first
Only one thing at a time....otherwise it’s impossible to know which is helping
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.
Private thyroid care - any tips please
Any Doctor Recommendations in the UK
Private GP
Which London based private doctor...
T3-private prescription 
