Hi all, after waiting 7 weeks for a face to face appointment I finally saw GP yesterday. I was hoping to convince him to give me a Levi trial even though they say I am subclinical. He totally disregarded most of my symptoms as not being thyroid related. I had to talk over him on some points as he just wasn’t listening & hadn’t read my notes.
He has now agreed that if my next test is raised he will approve a trial. I have a blood test booked in a couple of weeks, 8.30 & will fast etc.
What I am struggling with is I mentioned problems with difficulty swallowing, facial flushing & he smirked & said that’s not thyroid related. That’s not correct from what I have read. It is worrying that he didn’t even examine or ask any further questions about this. Not sure if I should push this further?
Any advice appreciated please.
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Pascinola22
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Looking back at your previous post your GPs have been dragging their heels for a few years.
Usually 2 TSH results above range can trigger the beginning of treatment but many GPs think it needs to be over 10.
Anyway, lets hope your next TSH is above range and then finally you should be able to begin treatment but it can be a long and slow road so keep expectations low for a while yet.
GPs are not specialists and even thyroid specialists know little about the subject! Best to wait for treatment to begin and see how you go. In time you will get used to lack of knowledge about thyroid amongst health professionals, sadly.
Have you tested vitamins yet and begun to supplement them to optimal? Many low vitamin symptoms can add to low thyroid symptoms.
Yes they have. I moved 2 years ago so it was like starting from scratch especially as my computer records didn’t transfer across. Initially I accepted what I was told until I started to research & found this forum for advice. I haven’t had vitimans tested for a while, it was a fight 3 years ago to get B12 injections. I will look into vitamin testing, thank you. I found it bad the way he was talking to me & disregarded so many symptoms & then admitted he hadn’t read the Nice guidelines in a long time.
He doesn’t agree that most of my symptoms are thyroid related. I am on B12 injections. He is testing Ferritin, Folate & Coeliac. But I was concerned with his comment about swallowing being troublesome. I am trying to push for meds, I just hope the test next time is the same level. I am struggling with it all & at a loss with what to do if I’m refused meds after the next test.
come back with new post once you get ferritin, folate and coeliac test results
you have B12 injections
Are you diagnosed as having Pernicious Anaemia or “just” low B12
How often are injections
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and may help maintain B12 levels between injections
Don’t start vitamin B complex until AFTER testing
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
I will post once I have results. It was low B12, 155 & I think lower limit was 160. Injections are 12 weekly. I will re read your post once I have had test results. Brain fog (which apparently isn’t thyroid related) means I won’t remember by then. Thank you.
Are you familiar with the Pernicious Anemia forum on healthunlocked? Many of the contributors require far more frequent B12 injections than you are receiving to alleviate their symptoms. Many self-source and self-inject. Not all have a pernicious anemia diagnosis, rather, a form of B12 deficiency.
No I didn’t know, I am on the fb B12 page, which is where I found out how low my B12 was. I do know about the self injecting but it’s not something I have tried. I will check out the forum thank you.
Strongly recommend the HU b12 forum. The fb group has a reputation for being somewhat ideological - I don’t know if that's fair - the HU contributors are very individual centred and kind. Your b12 jab frequency would not be sufficient to maintain well being for some people - do you notice any decline before the next injection?
The above link is an excellent review of b12 deficiency by a GP who specialises in the subject and pretty much covers the whole area and details just about everything you need to know about the condition and how to effectively diagnose and treat it.
It's about an hour but it might save you quite a lot of time!
Thanks for posting that b12 video cornwaller.... seem great so far.... i keep prodding my OH to read up on b12 symptoms but it's not happening .... i shall put it on when he's watching footy and turn the speakers up . lol.
once you have had coeliac blood test it’s always worth trialing strictly gluten free diet
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.
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
Assuming coeliac 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 minimum 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Many members find it can help reduce brain fog too
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
hello, just wanted to chip in here as I have hypothyroidism and swallowing/choking issues. I fought for the NHS standard b12 injection treatment and also now get 12 weekly. I did initially buy my own b12 injections and followed the daily protocol suggested by th b12 deficiency group up until i was no longer able to purchase due to brexit. I now take a sub lingual supplement daily of 1200 ug and find if i drop below that I will start to have swallowing issues again. My husband has hyperthyroidism and also developed swallowing/choking issues before diagnosis, again we treated with b12 and it is improved as long as he also takes the 1200ug daily so I do feel its very much a thyroid issue despite what the doctors think. Thyroid and nutrient deficiency/absorption problems seem to be very much connected.
Thank you. Doc just totally dismissed it as thyroid related. But didn’t offer any suggestions as to what maybe causing it. I will try again with a different doctor once I’ve had next blood results.
I knew I had read it somewhere. He actually said m that’s definitely not a thyroid problem. It was like banging my head against a brick wall. I would like to get the throat thing checked as it is uncomfortable, will try another doctor after tests I think.
Re. swallowing. I have this too. It hasn’t improved much since being on levothyroxine (6 months now). I will let you know how I get on pushing for more investigation. Mine is “transient” - worse in the morning, but I’m not sure if I’m so used to it I “forget “ about it for some of the day or if it genuinely comes and goes. I tend to just get on as I find it almost triggers a sense of claustrophobia if I don’t ignore it…
I had similar issues with my GP btw. I went private, got treated, and very recently my NHS GP “adopted” me back into NHS care with my established treatment. They even offered to sort out the medical exemption certificate for me (some GP’s don’t mention you’re eligible). How I’ll get on with them longer term remains to be seen, but this is a start 😀
Yes, please let me know. The swallowing thing is a bit random with me as in it is worse with certain foods although it is a pain even when I’m not eating. I may have to look at going private if it’s not too expensive. I’m over 60 so don’t pay for prescriptions anyway. Hopefully I’ll get somewhere after next blood tests.
No he didn’t. He said we could raise your dose of hrt, I told him that had already been done months ago but made no difference. He suggested it could be b12 & I told him I’m already on injections. So no idea really, apart from telling me they weren’t thyroid related.
Which I would rather facetiously suggest means that he does know they are thyroid related but is too scared to admit that his guidelines don't support him treating your thyroid. Sadly many doctors believe guidelines are instructions and/or don't want to have to justify making a contrary decision.
i have many chronic conditions and my thyroid levels are low , the consultant says she doesn't want to increase dosage because it has a negative effect on my heart medication. i am insulin dependent diabetic and have serious bladder and bowel problems. i wonder if my low thyroid levels are causing my gut problems ?
The GP’s I have dealt with have been woefully inadequate regarding my thyroid condition (Hashimoto’s Thyroiditis). They told me it wasn’t autoimmune (it is), they told me it couldn’t be Hashimoto’s because it’s rare (it causes 90% of hypothyroid cases) and it couldn’t be Hashimoto’s because it comes on suddenly (it takes years to progress). My GP was even obstructive when I asked for a second opinion from an NHS endocrinologist. I went private in the end because I realised that my GPs were utterly clueless which was frightening. My endocrinologist has given my GP’s strict parameters to work within and so far so good.
Wow that is terrible! I only ever get told I’m subclinical. I can see me having to go private. I just can’t keep arguing with them, I’m beginning to feel like a hypochondriac! I was actually talking over him in the end. I did offer to leave the printed version of the NICE guidelines for him to read! He declined.
Stick to your guns and advocate for yourself. They are ‘general’ practitioners and know a little about a lot. Seeing an endocrinologist who specialises in your condition will make things easier. Good luck 🍀
Highlight the bits in the NICE guidelines that pertain to you. Add a list of thyroid symtoms and tick those that you have. Stick them in an envelope and with a covering letter asking for a definite diagnosis, drop it off at the surgery.
It is no good saying what it is not, the GP should tell you what it is! The problem being they dont know and dont keep up with the research. They hate anything in writing as they have to follow it up, and most people will read a highlighted sentence.
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GP appointment this evening - feeling defeated already
Drs appointment tonight with Medicheck thyroid results advice please!! 
GP appointment update
Help for appointment.
