Well, my GP appointment following the endo appt was equally as fruitless. They absolutely will not budge nor consider levothyroxine until my TSH reaches the magic NHS number, at yearly blood test checks. Was told taking levo could cause me more damage. So that's me well and truly fooked (NHS-wise, at least). Although they did verbally confirm my diagnosis of Hashimoto's, so at least I have that! Am a bit put-off pursuing the whole thing really. I feel like no-one believes me, and am a bit reluctant to search for a private endo who might just mirror what the NHS ones have said. I'm feeling somewhat depressed, ill and vulnerable, and in addition to all this, I lost my lovely mum a few days ago 😭. On a bit of a downward spiral, I think...
End of the line for now...: Well, my GP... - Thyroid UK
End of the line for now...
Really feel for you TrainWreck59, but as you say, at least the Hashi diagnosis is confirmed.
When is your next thyroid blood check scheduled for? Just ensure it’s early morning (before 9am) and drink only water before the blood draw, as TSH highest first thing.
Not for another 6 months...and then annually 😞
I thought I’d share this link for The Wren Project with you. Many members have found it useful:
Oh wow, that looks like an interesting read, thank you. I'll be sure to delve into that 🙂
you can buy over the counter thyroid checks for around £40 at Boots, no need to go to a consultant, cx
It is so frustrating when you know that you have a thyroid problem, and the medical profession just ignores you.
However, even if the TSH does not reach the magic number, the guidelines actually stipulate that if your TSH is above the normal range but below 10 and you are symptomatic, you can ask for a trial of levothyroxine, especially if you had a diagnosis of Hashimoto's.
cks.nice.org.uk/topics/hypo...
Consider offering a 6-month trial of LT4 monotherapy in adults less than 65 years of age if:
The TSH level is above the reference range but lower than 10 mU/L, and FT4 is within the reference range on 2 separate occasions 3 months apart, and
There are symptoms of hypothyroidism.
So if you are symptomatic, you could insist that they give you a 6 months trial to see if your symptoms improve. Could you perhaps see another GP at your practice that might be more sympathetic?
I am very sorry for your loss 😢, it must be really hard struggling with your health and losing a loved one as well. My thoughts are with you.
Thank you so much for your kind words.
I literally tried every trick in the book, but to no avail. The GP I saw was the Senior Partner there, and I've pretty much exhausted the others too! I figure I've suffered with symptoms for close to 5 years now, may as well continue! At least until I can pull myself together a bit. X
Is going down the private route feasible for you TrainWreck59 ? I was diagnosed and treated via a private GP when my TSH was 4.69, hence the question. My NHS GP was equally unwilling to budge until TSH exceeded 5, describing me as sub-clinical” despite a raft of symptoms being present.
My private GP is on the Thyroid UK list, and I’m happy to share details. It only cost me £75 to see him (I did have to go 3 times before being referred back to the NHS but over a 4-5 month period). Drop a message over if you want to know more.
Oh TrainWreck59, (((big hugs))) I really feel for you, you are having a difficult enough time with your doctors without having just lost your lovely mum. I can’t believe your doctors admit that you have Hashimoto’s and yet are making you wait until you reach their ‘magic number’. That is just cruel.
I’m not surprised you feel as you do so hang on in - you will get there in the end. It might be worth contacting TUK for their list of thyroid friendly endos - or maybe that should be thyroid patient friendly endos.
Helvella posted a very interesting article recently about how people with autoimmune conditions feel that they are not believed theconversation.com/all-in-...
I totally agree with the findings in the paper because years ago I had Graves disease and was made to feel like a total hypochondriac.
Thank you so much for your kind comments x
Yes, I have the list of endos already...I'm just not doing very well going through it at the moment 🙁
And what an interesting article; food for thought indeed!
So sorry for the loss of your Mum
Private test results a month ago
Inflammation
CRP HS - 1.53 mg/L (range less than 3)
Iron Status
Ferritin - 51 ug/L (range 30-264)
Vitamins
Folate Serum - 20.5 (range more than 7)
Vitamin B12 - Active - 90.5 pmol/L (range more than 37.5)
Vitamin D - 49 nmol/L (range 50-200)
Thyroid Hormones
TSH - 2.97 mIU/L (range 0.27-4.2)
Free T3 - 5.3 pmol/L (range 3.1-6.8)
Free Thyroxine 9.8 pmol/L (range 12-22)
Autoimmunity
Thyroglobulin Antibodies - 102 kIU/L (range 0-115)
Thyroid Peroxidase Antibodies - 306 kIU/L (range 0-34)
Ultrasound scan confirms Hashimoto’s
Are you now working on improving very low vitamin D
And increase iron rich foods in your diet
Retest full thyroid and vitamins privately in another 2-3 months
Your TSH is not responding to low Ft4
Thank you for your kind words x
Sorry for your loss. It must be a very hard time for you 😔 I really feel for you as I was misdiagnosed and labelled for years before I proved I had central hypothyroidism - where your FT4 is low or below range but TSH does not rise at all or there is a weak rise (like you).
Could you have central hypothyroidism and Hashimoto's? Yes, it's possible. They never look for central hypothyroidism and many people remain undiagnosed. Please take a look in my biog. It details how I proved I was hypothyroid and finally got treatment. It's been a game changer.
Feel free to message me if you want.
see what results show after next test
Roughly where in uk are you
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
I’m so sorry for your loss. I lost my mum whilst in the midst of getting diagnosed so I can totally relate. It’s devastating but I promise that it gets easier to manage. You just have to go through the process. Sending lots of love. Don’t underestimate the importance of increasing your iron and D levels. If I’m honest, I’ve felt more of a benefit from doing this than I have from the increased doses of levo. xx
Thank you for your kind comments, and I'm so sorry you also had to go through such a tough time whilst getting diagnosed x
Yes, I'm taking care of myself vitamin-wise, and I do feel somewhat a sense of relief that at least they've recognised that I have Hashi's, even if there's nothing they'll do about it right now.
Aw, so sorry to hear of your bad news, take care, lots of hugs.
I feel for you. NHS required treatment hormone s levels are wider than many countries, often leaving us in a mess which effects our everyday lives. I've had contradictions (quite severe ones) gp to Consultants and vice versa. When push comes to shove no help even when the consultant started by saying I fit the criteria and bloods do not always show to nhs required levels. That make Dr's puppets lol. If you go private do be aware they are 99% nhs Consultants and generally give exactly the same opinions but with better listening appointment times. I wish you luck.xxx
So sorry for your loss and sorry you're going through all this.
This is a quick post as I'm short of time but I wanted to let you know I was in a similar place when I joined the forum although I never managed to see an NHS endo so well done for that! I saw a private GP who prescribed straight away, on the basis of that was able to switch to a private pharmacy. Still trying to get my treatment right but with that alongside working on my vits and mins, feeling a lot better than I did. So don't lose hope!Private endos seem a mixed bag but some GPs at least seem more amenable, I chose one from the thyroid uk list as SD mentioned. Best of luck! In haste, C
Apologies as I’m just replying v quickly without reading the rest of your thread, but absolutely go private if you can possibly afford to do so.
I’m confident I would not be here today if I hadn’t had this forum and sought private help.
I spent around 18 months very ill, and had numerous trips to the GP and tests for everything from leukaemia to brain tumours, and all through it they said “your thyroid is fine”.
I went private and after two consultations and a bit of levo investigation in between, I was given T3, told I don’t convert and have made a total recovery. And what’s more I’m here about 8 years later to tell the tale.
Don’t be put off, it’s so hard keeping positive but you deserve to feel well
Hi,
It’s crazy that so many Dr’s in this day and age can’t, or won’t, get more savvy regarding hormones.
My gp has a nurse as a specialist in hormones ..mmmm…she can logically only be special in understanding hrt meds not endocrinology surely. Anyway, lovely lady, prescribed hrt BUT then see the Endo who was astounded at what I was about to be prescribed and wrote to them saying not to. Apparently would have much worsened my symptoms.
Seems being prescribed or not for hormones can be terribly wrong both ways.
Why is it so hard to get decent help quickly for hormonal issues, caused by various medical conditions 🙄?
x
So sorry to hear about your lovely mum. xxx I lost my mother just before I got my own underactive thyroid diagnosis, so it all just rolled into one big blur. I'm new on this forum, so haven't any advice to give except sympathy for you. I did find that removing inflammatory food triggers improved my symptoms remarkably for nearly a decade (for me it was gluten and soy) but now is not the time for you to try to do anything as stressful as a huge change in diet while you're grieving and in shock. We believe you. Just look after yourself for now and do what you need to do to survive, and that Wren project looks very helpful for emotional support and advice. Love to you. x
like a lot of other people you are finding that doctors aren’t bothered about symptoms as long as we are in the ranges
They still aren't bothered about symptoms even when we are out of the ranges!
Sending hugs - take some time and just be kind to your ' self ' -
in a while you'll feel better prepared for your next step back to better health and well being.
You have my sincere condolences. It's only just over a year since my Mum passed away. Take it 1 day at a time and the reassess going for a private consultation. I am mentally preparing to go private myself and scared they will act the same as the GP.Be kind to yourself whenever you can
Angie
I am not a huge proponent of Levothyroxine because I was put on it with just an elevated TSH and no symptoms . If you feel strongly about your situation what I would do is view some of Westin Child's podcasts that explain the thyroid gland and it's healthy function and if you still feel strongly put together a presentation and send it with a note to both physicians aka make your case and insist on a response . Sadly here in the U. S. we have far too many physicians who practice by a "Protocol Manuel " no real diagnosing really going on! I ended up reading incessantly and spending a lot on books and materials to learn what Westin Child's really does an excellent job explaining . Yes, he sells supplements , but his free on You Tube presentations are terrific , well done and do a great job of making the thyroid gland and its function and lack of function really understandable and you don't have to buy ZIP !
Hi TrainWreck 59,
I’m really sorry to hear of your diagnosis and the very recent loss of your Mum. I went through a very similar situation when I was diagnosed with thyroid cancer and told I had sub clinical hypothyroidism, and then my Mum passed away. It’s a very difficult situation to be in so, you need to really look after yourself. I didn’t know about The Wren Project (noted below) and I think it might be a good place to start. There is also Cruise that can help with grief and Sue Ryder Grief Kind too.
As regards your Hashimoto diagnosis it might be useful to post your blood test results so people on the forum can help.
Good luck and keep positive, my thoughts are with you.
TTxx.
I’m deeply sorry for your loss. I’ve lost my mom too (mannnnyyy years ago) so I know that pain- and on top of medical struggles and not feeling heard or getting the treatment you need…I am surprised you have the wherewithal to even post, but I’m glad you did. Keep listening to your body and keep advocating for it- I had same issues but found a new endo…and he is amazing. He Ordered 18 line items worth of blood tests (first endo ordered 9). If you want, I’ll share the full list and perhaps next appointment you have, you could request it?
Just curious, have you considered finding an endo outside the country? Is that a possibility for you if you cannot locate a better one near you?
Your situation breaks my heart. I’m so sorry for what you’re going through. Keep fighting. You can, and will get through this! 🥲
I can understand your frustration at the medical gaslighting that you have been subjected too. I was "subclinical" for years before my TSH reached the 'magic number'.
Was the Endo you saw a thyroid specialist because too many Endos specialise in diabetes (paid well) leaving other endocrine diseases alone.
To get a full picture, they must test conversion from T4 to T3 which is the active hormone that boosts/maintains metabolism and produces energy to your muscles.
Annoyingly, the NICE guidelines for thyroid management say that T3 doesn't need to be tested for people with hypothyroidism yet poor conversion of T4 to T3 results from not having enough T4 to convert in the first place.
May I ask whether they have tested your vitamin D, vitamin B12 and magnesium levels? Magnesium is important in the conversion of T4 to T3. Deficiency in any of these makes your symptoms worse. Magnesium is essential for converting T4 to T3. It should be at a level of 0.85 or above. Vitamin D and vitamin B12 are often found to be deficient in people with autoimmune thyroid disease. They are essential for making you feel well in all sorts if ways. Vitamin D should be at the optimal level of 75 or above.
Please ask to be tested. Ask for calcium to be tested too. Low vitamin D helps to regulate calcium and phosphorous in the blood by the parathyroid glands. Low vitamin D raises the PTH hormone increasing calcium levels which also make you feel awful. Hyperparathyroidism can result. People with Hashimoto's can also have underlying hyperparathyroidism - I did and it confused clinicians for 20 years because I had very low vitamin D.
Levothyroxine is a replacement hormone. Hashimoto's is an autoimmune disease. They need to treat the underlying autoimmunity as well. Just giving you levothyroxine could create a goitre.
You could make formal complaints to PALS at the hospital and the practice manager at your surgery. Information on the Healthwatch website can help with making complaints. There are medical advocacy services (one is free) that can help too.
TSH and T4 fluctuare throughout the day. Look up the circadian rhythm. It is advisable to have blood tests before 9am and before other meds and food.
Hi hun, time to change your name to trainwrecksurvivor. Eat a Brazil nut or 2 everyday, drink isotonic drink everyday, I use powder, put a heap scoop in a litre and half water. Keep fluids high. Take b complex, get the high strength, not cheap crap, you end up taking 5 times the amount, so you don't save, will turn pee illuminous yellow, so dont panic,, take vit d,, I take sporadically, steam inhaling with pink salt, drink a cup of licorice root tea everyday, buy loose, not in bags.
If you can do cv work at home or gym, do it.
I have been on levo for 24 years, I'm now off it, now on ndt, symptoms mostly under control, unless I don't take care of myself.
Good luck
First blood test results now I am on a combo of T3/T4. What do these results suggest. Thank you
Reputable supplier for T3 5mcg?
Hashimoto’s- became euthyroid now hypo in a year 
Coming to the end of treatment. A little nervous.
A small lump in the centre of thyroid 
