I’m having my first NHS Endocrinologist appointment this month.
I was diagnosed with hypothyroidism over 15 years ago and I only have had thyroxine prescribed (currently 150mg). I have gained at least 6 stones in weight in this time and simply cannot lose any weight. The symptoms that give me the most trouble is; weight gain, fatigue, gerd, brain fog and anxiety although I do have other more minor symptoms.
My question to this group is how can I get the best out of my endo appointment?
Thanks for any help.
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mazza999
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Let's hope the Endo you're going to consult with is sympathetic, knowledgeable and helpful.
The reason you've gained weight is due to being hypothyroid and not on a dose of thyroid hormones that raise your metabolism.
I think nowadays they only take account of the blood test results, whereas before blood tests were introduced all the emphasis was upon our clinical symptoms and given small increases until we felt well once more.
Unfortunately for many who do and have got weight gain and still have symptoms they've had an awful struggle and I believe the weight gain will be put down to eating the wrong food, when it is that we're on an insufficient dose or allowed an 'option;.
An option would be a T4/T3 combination or prescribed Natural Dessicated Thyroid Hormones, except that the 'supposed to be experts' withdrew this, despite it being used since 1892 onwards and patients no longer died of hypothyroidism (untreated).
Request your Endocrinologist to trial a T4/T3 combination as you feel you've struggled long enough and that GPs will not prescribe T3 and due to GPs seemingly having insufficient knowledge - otherwise we wouldn't be consulting with an endo.
I will cross my fingers that he/she will trial eitherT3 alone or added to your T4. The fact too that 'those at the top of the tree withdrew NDTs a few months ago, despite its safety being proven from 1892.
Shaws an NHS Endo can prescribe a NDT. The options allowed on the NHS are Armour or Erfa. The rest of NDT products on the market Ive been told by my pharmacist have been removed from the Formulary List. Ive recently had to move from Accella NP to Armour because of this. As for 'wisdom' on the NHS there is none........sadly this isnt just the case in the thyroid world but in general terms.......unless you hit gold with one of the rare gems out there.......though I think many are exiting like rats fleeing a sinking ship.
Can maybe, but rarely do! I had an excellent Endo who was sympathetic and happy to give it a try but he was out voted by his department colleagues. I now have to pay for it privately
Sorry to hear this Lisabax. I fought long and hard for mine. Took three years and in the meantime I had to pay for it. When I did get it recommended on the NHS I then had to find a GP Surgery to support it. Same with B12 jabs. The point Im making though is that it is available on the NHS so that people know this or they wont even try and then the idiots who have made it so hard will have won.
I absolutely take your point but wouldn’t want to raise any false hopes. It would be great if there was some kind of postcode list saying where you’re more likely to get it 😀
I dont think its a postcode lottery. Where I live the person who head up Endocrinology is well known to be a total hater of ndt and liothyronine and is a great advocate of saying no one under a TSH of 10 should be treated and in addition loves to leave patoents under treated stating its all in their minds. I refused to be seen by that department and got referred elsewhere. You have the right to choose where you are referred to........just pick super super carefully! That person did try to interfere via the cardiologist who was at the same hospital but couldnt really as my endo wasnt under him.......thankfully. So yes I agree its a mindfield and you should be prepared for a long old haul but please dont let them win!!
You are so right Shaws. Its criminal what is going on. NDTs were never withdrawn.....that was a myth but what has changed hugely is all the obstacles put in the way to get them prescribed. Only an NHS Endocrinologist can recommend them.......before a private endocrinologist or doctor could as well. So much pressure has been put on the NHS Endos to not prescribe NDTs that its very hard to get one to agree to do so. I say NHS endo, one of my friends got it on the nhs using a private Endo, but he had very recently retired from NHS practise so her GPwas happy. She had been on Armour for years but then had to get pernission to continue. Its all bonkers. Lol..... Sadly I see no end to it and scarily not based on any substantial research......
As females are the No.1 (I believe) to develop a dysfunctional thyroid gland it would lead one to believe that those at the top of the endocrinology tree are so biased due to the low number of males who need to take thyroid hormone replacements.
How skilfull our older doctors (before blood tests) were that they could diagnose due to symptoms alone and were all trained like Dr Skinner and Dr Peatfield - both (towards the end of their working life) pursued as if they were criminals. When, in fact, it is those who make the 'guidelines' would seem to me to be the more guilty party but who don't get their knuckles rapped so they feel invincible!
I think that those who have dysfunctional thyroid glands should be able to request what they wish to trial initially and when satisfied should be able to request the make.
At least with this forum everyone can ask a question and get advice - advice the GP cannot or will not give as they are also poorly trained or told the only prescription they can give to a symptomatic patient. One doctor I know told me that T3 converts to T4! I said 'no doctor you are wrong'. This should not be happening in these days.
One GP phoned before I was diagnosed - after I told him I would have to pay for a 'full body scan as I am very unwell' - to state he'd do another blood test as I may be told I have a complaint that I don't have!
Why do we need 'prescriptions anyway' when in other countries the pharmacist is quite happy to hand them over the counter without questioning the buyer? Mind you the cost in the UK is ridiculous and there should be an investigation why it is so expensive!
I pity those who do not have an internet connection and are very unwell on levo alone. It is no wonder that some people take their own lives as their suffering continues daily and they can see no light at the end of the tunnel.
GPs don't understand how to restore in some way their patients' health through prescribing a T3/T4 combination or T3 alone. Now that the 'supposed to be' experts have withdrawn NDTs and also T3s (without any forewarning') I don't think endocrinologists will be happy to have more patients, the majority who want to trial T3 or T3/T4 or NDTs.
You are so right Shaws. Poor Dr Skinner would be horrified but maybe not surprised that the situation has worsened since his valiant efforts to improve matters. I didnt know endocrinologist have withdrawn T3 & NDTs but I do know many won't prescribe either meds now. Also the whole regime of TSH testing only defies research which shows it leads to undertreatment.....but is now common practise. Woe betide you if you challenge it!
As for ignorance it knows no bounds in the medical world. It almost feels like a requirement! A recent example was being told to lower my thyroid meds because FT4 was marginally over range whilst suffering a horrible virus that I was struggling to still fight off after 5weeks. What a nonsense to reduce at that point in time? But there is no common sense in the medical world and seriously very little knowledge.
I am so grateful for this forum, to Lyn and you plus the other admins that run it. This forum & lovely Dr Skinner is the reason why I am well. Left to doctors I wouldn't be.
Fair point mazza999. I apologise as we both digressed. However it was in answer to Shaw response in which she talked about t3 & ndt being withdrawn from the nhs which is incorrect. . It is important that you know that. However it is hard to get an Endo to prescribe either of these types of thyroid hormones treatments if you were to need them.
I'd suggest you get FULL blood testing first - on the NHS if it's an NHS appointment, if you can, but otherwise private. So that means: TSH, free T4, free T3, thyroid antibodies (unless you know these have been high in the past) and key nutrients - ferritin, folate, vit D and B12. I've had some success with both the GP and endo by saying that these are the tests recommended by Thyroid UK. You can get info and discounts on private testing on the main Thyroid UK website - or SlowDragon may pop up in a bit - she does a good summary
Always, always an early morning fasting blood test (no later than 9am) when TSH is highest, and 24 hours from your previous dose of levo.
Then post the results here, along with the relevant lab range (these vary from lab to lab) and the lovely people here will help you to understand them, and give more info on what to say to the endo.
In my experience it's pretty well impossible to lose weight unless free T3 (the active thyroid hormone) is nice and high, but it's so rarely tested
First step is to get hold of blood test results from last few years if not got them already
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Do you always get same brand levothyroxine at each prescription
If yes…..which brand
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least annually
What vitamin supplements are you currently taking, if any
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s.
Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too
Low vitamin levels common as we get older too
Approx how old are you?
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 and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
STRONGLY RECOMMEND getting FULL thyroid and vitamin testing done BEFORE consultation
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
Is this endocrinologist a recommended thyroid specialist endocrinologist?
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% 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
20% of Hashimoto's patients never have raised antibodies
If both antibodies are negative request ultrasound scan of thyroid
If autoimmune thyroid disease is confirmed you need coeliac blood test via GP or endocrinologist
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 further 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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
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
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
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.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Thank you very much for your response to my question, I'm working my way through the information. In answer to a few of your questions:
I am 64
I do not get same brand of Levothyroxine – last prescription had four different brands. I assumed this was due to Brexit or Covid complications. The brands I have currently are:
• Wockhardt
• MercuryPharma
• NorthStar
• Accord (usually this one)
Currently taking
• Vitamin D
• Magnesium
I didn’t get the chance to pick a specific endo I currently have an appointment for Dr K D Habouglia” or a member of his team”
I am considering delaying my appointment so I can get more information before attending. I am thinking of getting a Thyroid Plus blood check with Genova.
Many people find Levothyroxine brands are not interchangeable.
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
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
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
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
Dr Kamal Abouglila? In the north east? That’s the closest match I can find. Looks like he specialises in diabetes but does at least reference some experience in autoimmune thyroid disorders on his profile page.
I see Dr Abouglila at Durham hospital and he’s lovely please don’t delay your appointment , I picked him from the thyroid uk list and saw him privately and he transferred me to his nhs clinic , he couldn’t prescribe T3 but as I had some said he would look after me and now gives me a private script, it was the best money I ever spent PM me if you want to
Is your surgery arranging a thyroid blood test for you prior to the endo appointment ?
If so ask for your copy, and then start a new post and share the results and ranges with forum members and then we can advise of pertinent questions for you to ask of the endocrinologist.
Or, better still, if there is time, order your own full thyroid blood test to include the antibodies, and vitamins and minerals through on the private companies as listed on the Thyroid UK website, for a more comprehensive set of results and much better prepared once we talk you through the results.
This is where we all start off, getting full private blood tests, as sadly in primary care, doctors seem unable to action the necessary blood tests we need.
Make a list of all the things you want to ask and another of all your symptoms. It’s very easy to forget things when you’re there, especially if you’re a bit nervous. You’ve waited a long time for this appointment, I hope it all goes well for you.
It might also be worth asking for your cortisol levels to be tested as well as they can cause weight gain if cortisol is high.
Ps I did private bloods before my appointment and listed all my symptoms and the first thing he said when he looked at me was “I can see you are under medicated “he did full bloods including cortisol and I see him every six months now
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