I'm incredibly frustrated, and frankly angry, with the standard of care - or rather the lack thereof - that I've received from my local surgery.
I initially went to the doctor 18 months or so ago complaining of feeling constantly exhausted, gaining weight, and struggling to focus. I mentioned at the time that I felt I might have a thyroid issue as my symptoms were similar to a colleague with hypothyroidism, and my grandmother also had hypothyroidism.
The GP sent me off for blood tests and I heard nothing from the surgery so called them after a few weeks to be informed by a member of the reception team that all of my results were normal, when I asked her exactly what I'd been tested for she reeled off a few things, including my thyroid, and then said if she told me everything I'd been tested for she'd "be there all day"
Assuming my results were indeed normal I resigned myself to feeling crap and put my fatigue down to work, the menopause and life in general as a single parent...Fast forward a year and still feeling rubbish, by this point with my hair falling out as an added bonus, I went back to my GP to enquire about HRT. After having waited weeks for said appointment I was in and out, HRT prescription in hand, in five minutes flat.
I duly began the course of HRT, six weeks in I started bleeding exceptionally heavily, and my hair loss also suddenly increased dramatically. In a bit of a panic, I called the surgery, only to be told that I couldn't see a doctor and the best option they could offer me was a telephone appointment in three weeks time, which I declined.
Unsure as to my best course of action I stopped the HRT and, in sheer desperation, turned to Dr Google who informed me I could request copies of my previous blood test, which I did. The test showed that my TSH was above range, and that my folate was low, with a recommendation to begin taking folic acid. I hadn't been informed of either of these things, and on my subsequent visit to the GP she had blithely prescribed the HRT with no mention of the possibility of thyroid issues.
Following a complaint to the Practice Manager my GP called me to schedule an appointment. During this appointment she was very dismissive of the original test results, repeating that levels "fluctuated" and that my TSH was "only just" out of range. I cited the NICE guidelines re symptomatic subclinical hypothyroidism (thanks to info from you guys!)and she reluctantly agreed to trial me on levothyroxine at a starting dose of 25mcg - I'm early 50s with no underlying health conditions. I also spoke to her about my continuing hair loss and the emotional distress it was causing me, she suggested it could be age / menopause / stress related but that it wasn't always possible to underline a root cause. At no point has she actually examined my scalp, explained that low iron, D3, folate or B12 could be factors effecting hair shedding, or given me any further information, advice or options.
I began taking the levo, and felt even more exhausted than I had previously - I understand it replaces TSH rather than "topping it up", so presumably this was due to the low dose. Exasperated I made an appointment to see a different doctor, who was even more disinterested than my own GP, and believe me this was no mean feat! I requested to be referred to a dermatologist in relation to my hair loss, which he refused, suggesting I should "eat leafy greens and try Minoxodil" I explained to him that I felt worse since beginning levothyroxine - although my TSH level had fallen slightly to 3.15 (although the relevant bloods were taken mid afternoon for something unrelated, and I'd been supplementing with Biotin, so not sure how reliable the figure is) and he upped my prescription to 50mcg, which I understand to be a starting dose - I was in tears pretty much throughout the appointment, so not at my best in terms of advocating for myself!
Yesterday my GP called me, as she had scheduled to do so after two months of me beginning levo. She asked how I was feeling. I replied in no uncertain terms that I was feeling pretty awful, felt like my dose of levo was too low, was singularly unimpressed with my treatment by both her and her colleague and essentially felt like I was being told to "piss off and go bald" (clearly I wasn't at my most eloquent by this point!) she refuted this and stated that rather than increase my dose of levothyroxine perhaps we were "coming at it from the wrong angle" and I should "try another brand of HRT" - it goes without saying that this would be another random HRT prescription as, to paraphrase, any kind of sex hormone testing is "just a fad"
So there you have it. Despite raised TSH, classic hypothyroid symptoms and thyroid antibodies in the hundreds I am not, apparently hypo, merely some over emotional, menopausal, hypochondriac.
Thanks for reading if you've made it this far - it's at least vaguely cathartic to get it off my chest!
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Hux71
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Well done for getting it off your chest 👏🤗 your NHS experience has been very much like mine 😕 it's taken me a long time to lose the feeling of anger at having been so let down.... here is the place to learn how to fight back
I found that knowing which HRT you would like is a useful thing as they start you on the cheapest awful pills and go from there, so if you do want to experiment with HRT ask for oestrogel or lenzetto ( easy to tailor the dose) and utrogestan which are all body identical and like you say they hand it out easily enough...
My hair was coming out by the handful but it's all good now... what dose of T4 have you got too? Have you added all the supplements you now know you need?
I'm afraid as you have probably read on here there is some months of pain to go through to get up to a decent level of T4 and then you still might find that you don't convert and the struggle continues to try and get your hands on T3.
Are you able to get a decent private test for thyroid and sex hormones so that we can give you some better pointer?
We'll get you there but looks like you'll need to educate your GP on the way.... we are all working on that front 😬
TiggerMe Thanks so much for your reply - I'm currently on 50mcg of levo and still not feeling great, although my prescription was only upped from 25mcg a couple of weeks ago.
I've done a Thyroid Function test via Medichecks, and more recently their Thyroid Antibodies test, this was at the end of June, shortly after I began taking levothyroxine, results at this time were as follows:
I'm unsure whether renal function is in any way related to thyroid issues, but as an aside, my creatinine level is above range at 93 umol/L (45 - 84) and GFR is 62mL/min (>90) Needless to say, my GP hasn't commented on, much less clarified, these particular results.
I'm supplementing with Super B complex, D3, K2, iron, magnesium glycinate, selenium and zinc and endeavouring to eat more healthily but haven't (yet) cut out gluten or dairy.
I've been loathe to reconsider HRT after my initial experience, and , as I said, my GP is only willing to try me on another random brand without any kind of consideration as to my hormone levels. I guess my best option is, as you suggest, to test privately and research accordingly.
It really shouldn't be this difficult to feel okay
Impaired renal function is common with hypo's, should improve once you are on the right dose... looks like you still have an increase or 2 to get near replacement level unless you are petite.
Have a look at the Balance App and like you say get a test to see where your levels are 🤗
hopefully you'll feel a little better for a week or so on 50mcg , ( feeling better usually doesn't last long until on larger dose) ..... so assuming TSH is still in range wen tested after 6 wks on 50mcg ....
then if GP comes out with the 'no need to increase levo' humbug again ...., put this under their nose .
(any GP who says TSH over 1 is ok when patient still doesn't feel well needs to be made to to read and acknowledge all of these references...some are taken directly from their own 'update' sources)
tattybogle Thank you for the links - I shall ensure I'm au fait with them before my next visit to the GP. She appears to believe that if 25mcg of levo hasn't "cured" me my symptoms are all in my head!
I'm really sorry you've been put through this, unfortunately your experience is far from unique. I'm pretty sure many, if not most of the members of this forum have been fobbed off, patronised and dismissed by medics on their thyroid journey.
No wonder so many self medicate or turn to forums like this because frankly the 'care' for our health just isn't good enough. I think your experience will resonate with many of us 😒
Sparklingsunshine on one hand it's a comfort to know I'm not fighting this battle alone, but on the other it's simply scandalous that so many of us are suffering when we shouldn't be
Agree absolutely,I dont know if you've managed to read many posts, past and present but a very common trend is how many GP's (and Endos) simply dont know how to treat thyroid patients. Either due to ignorance, or a sheer pig headed refusal to deviate from what they were taught in Med school.
Its totally inexcusable as hypo is very common. Unfortunately you are learning as did the rest of us that you have to advocate for your own wellbeing. You can't rely on doctors to do it for you.
I hate so say it Hux71 but join the club. Most on here are unfortunately overly familiar with your plight. Please follow advice from our very able administrators and regulars. Stick with us.
low iron/ferritin very strongly linked to hair loss
Request GP full iron panel test including ferritin NOW
Also Vitamin D. Folate and B12 levels tested
thyroid antibodies in the hundreds
which thyroid antibodies
Assuming TPO antibodies this confirms autoimmune thyroid disease also called Hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Retest thyroid levels 6-8 weeks after being on 50mcg levothyroxine
Which brand of levothyroxine is 50mcg
You will need further increases in levothyroxine over coming months
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
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
While still eating high gluten diet ask GP for coeliac blood test first (as per NICE guidelines)
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
If you haven't already, make sure you download the NHS app and sign up so you can get full details of all tests going forward. Ignore automated nhs texts or calls saying your 'results are in range' with no other details. You need the actual numbers and ranges to analyse these and know exactly what is going on. The app is very useful for this. Good luck!
After reading your post I’m equally mad as hell with your Drs. You definitely need an increase in Levothyroxine. The NHS ranges are too wide. You should never be over a TSH of 2.5 and preferably around 1.00. To achieve this you need both T4 and T3 levels optimal for you individually. I’d suggest you go seek help from a private only endocrinologist. I did this and he helped me immediately. I thought it’d cost loads but it didn’t. You don’t even have to travel either. My private only endocrinologist does telephone, zoom and face to face consultations. All you need is a GP referral letter to him. If you’d like his details please private message me. The NHS is appalling when it comes to thyroid issues. I suffered for 15 years until I finally went private only. Now I have my life back in buckets and feel 20 years younger, healthier and happier. Your GP’s should hang their heads in shame.
McPammy I'm sorry to hear you were unwell for so long I've contemplated seeing someone privately, and feel it may well come to that, ultimately. But I want to exhaust my options within the NHS first...If we don't fight the system what becomes of the thousands of people who simply can't afford private treatment?
Oh I agree. But for myself after 15 years+ of poor treatment and zero help I was advised on here to seek private only treatment. Within 2 consultations I was diagnosed and given the T3 medication that the NHS refused due to the cost of it. I got a years supply for £60 from Germany. The private money was the best I’ve ever spent on anything. Without your health life stands still and suffering happens.
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GP increased T4 while T3 was reduced. Please help decipher bloods so I can direct her to the next best step with unsympathetic Endo. Thanks!
Latest bloods - GP reducing my levo :( 
My story so far, New-ish and seeking further advice
Latest GP appointment
Follow up with GP
