GP says I'm not hypothyroid, considering going private - can anyone advise about costs inc private prescription, + other thoughts please?

[FoggyThinker]

Hi all,

I previously gave my thyroid test results at healthunlocked.com/thyroidu...? and my adrenal function test results at healthunlocked.com/thyroidu...

General consensus (although not without exception) was Hashimoto's, which makes sense to me with my symptoms; also low ferritin, I'm enjoying weekly liver and liver pate plus green leafy veg, and low folate, I'm taking the recommended basic Bs, and thanks all for the recommendations I'm also reading Isabelle Wentz' Hashimotos Protocol book.

I haven't as yet had a thyroid scan as suggested, as I wanted to wait for my GPs appointment which was today and was a bit of a disaster. I didn't help myself to be honest (ended up crying, how embarassing!), I did try really hard but doctors make me a bit anxious and I find it hard to talk about how unwell I'm feeling and how much it is affecting life, plus the cognitive problems I'm having make it hard to put a case clearly, but I did send over a summary of my symptoms and reasons for concern along with my test results prior to the appointment. The GP was perfectly nice, said she feels my test results don't show I'm hypothyroid, but agreed that there is clearly something wrong, suggested I'm depressed (I could already tell that was her thought from the line of enquiry), I told her I'm definitely not, I disagreed with her concern that I reject this due to stigma around mental health. Left it that I will book some more blood tests.

I don't think I'm going to get far going this route.

I would be interested in others' opinions about whether I'd be better to just go private, and what the ongoing costs are likely to be for prescriptions? I'm lucky to be in a position to be even able to consider it, but funds are definitely not unlimited.

I have the Thyroid UK list of private practitioners and can see initial and follow up consultation fees. How often would I likely need a follow up consultation if I go this route (if it's possible to say, I can imagine this might be a how long is a piece of string question)?

Would I be likely to have any joy then transitioning back to the NHS?

Or any other thoughts on this course of action, please?

[SlowDragon Administrator]

Before considering booking any consultation

Suggest you try strictly gluten free diet

And get ultrasound scan of thyroid organised

Retest thyroid levels again in another 3-4 months

possibly then consider trying dairy free diet

[FoggyThinker in reply to SlowDragon]

Thanks again SlowDragon. Yes, I've come to the conclusion that the gluten has to go over the last few days, too soon to see dramatic thyroid differences but I do think I'm noticing less acid reflux issues. It's helpful to hear you say I may be on the right tracks there, I'll keep on (and ignore my marmite on toast cravings!). And I'll book that ultrasound. My thyroid area actually *feels* uncomfortable now

[Regenallotment Ambassador in reply to FoggyThinker]

I have marmite with tahini on a rice cake - an absolute taste sensation. Poor relation is marmite with peanut butter mmmmm 🦋💚🦋

[suesdude in reply to Regenallotment]

I got so sick I went on a carnivore diet it's taking a while but I'm getting a little bit better. My doctor said if my ultra sound came back with my thyroid tore up she didn't care she's looking for growths. she also refused to do a full thyroid panel!

[SlowDragon Administrator in reply to FoggyThinker]

some gluten free bread is excellent…especially toasted in a separate dedicated GF toaster

Marmite it’s (probably still not) gluten free….but other makes are

Sainsbury’s is GF

Waitrose brown seeded GF is delicious

Warburtons is good

Waitrose and warburtons do “thins” good toasted or as sandwiches

[FoggyThinker in reply to SlowDragon]

Thank you! I had no idea about this. I tried making GF bread before in my breadmaker, using Doves GF bread flour. It made what I can best describe as an Unidentified Bread-shaped Object. I'll give those a try instead

[SlowDragon Administrator in reply to FoggyThinker]

I have been absolutely strictly gluten free since 2016

results were astonishing

Read all labels carefully

Loads of different options available in different supermarkets

Ocardo have lots of choices……including one of my favourites….scampi and GF chips 😀

Breakfast, I make my own muesli using certified gluten free oats ……Waitrose ones are best (tried loads)

Adding…..own choices of seeds, and chopped nuts and dried fruit

Dates, figs, raisins

Walnuts, almonds and brazils

Flax, golden linseed, chia, pumpkin and sunflower seeds

I am now (recently) dairy free too ……been surprisingly easy and seeing improvements

[FoggyThinker in reply to SlowDragon]

Thank you again. Your muesli sounds really good! I make porridge with seeds and peanut butter (I know the peanut butter's OK but I wonder about the oats, I'll need to check) plus oatmilk. I do like avocado on toast so if I go with the GF bread I could still do that, too. I'm really glad to hear you are seeing results, it must make it all worth it too Have you tried being strict and "non-strict" about gluten?

[Buddy195 Administrator in reply to FoggyThinker]

I’ve posted before on my attempts to make GF bread in a bread maker with a GF programme, but the results continue to be far worse than the loaves available in supermarkets.! My GF baking of biscuits/ cakes has improved & adding xantham gum seems to help with texture.

[FoggyThinker in reply to Buddy195]

Thanks Buddy, I'll have a look through your posts and see what I can learn. I'm wondering about soda bread, seems like the gluten would be less important as I'd usually use plain flour rather than strong...

[FoggyThinker in reply to SlowDragon]

SlowDragon please could you tell me a bit more about what I would do after an UltraSound, if it did suggest that my Thyroid is in trouble? Is it for my own knowledge or is this something a GP would act on even though my test results are "normal"? (I'm struggling to form the right words tonight - I hope you see what I mean, anyway)

[SlowDragon Administrator in reply to FoggyThinker]

Because your TSH is not high enough to get (easily) diagnosed

Nor do you have high TPO antibodies

20% of Hashimoto's patients never have raised antibodies 

ultrasound scan can show damage

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

[GlowCoach Administrator]

The thing is, even if you go privately there really is no guarantee you would get diagnosis and treatment. Endocrinologists are a really tricky lot with very fixed ideas and you just might be wasting your money paying for a private appointment. They generally stick to the NICE guidelines with very few exceptions. There have been doctors who tended to work outside the official guidelines and they were hounded down by the GMC and where possible struck off.

I'd follow SlowDragons suggestions initially. Dietary changes alone for Hashi people can make quite a difference in fatigue levels. Also work on raising any vitamin levels that are less than optimal.

I did see a private Endo recently (£250 1st appt, £150 appts thereafter) and in his particular case he likely won't want to see me too much so long as I provide blood test results as necessary. He does reserve the right to ask to see me at any point though which is fair enough. As doctors practice as individuals outside the NHS each Endo is likely to have different thoughts and requirements on how often they need to see you.

Cost of meds would depend if you're Levo only or Levo and T3. Levo only would be not expensive at all concidering tablets are pennies each.

Honestly I genuinely feel for you. I was caught in this trap for a few years a long time ago now, just waiting for the magic TSH numbers but with antibodies. It's a really horrible place to be but you do have a few things to be working on in the mean time. Hang in there.

[FoggyThinker in reply to GlowCoach]

Thanks Jaydee, that's so true, it really is horrible. The thing is that I've been gradually getting worse since about age 16 but the numbers don't seem to reflect the problem; and those are exactly my concerns, that I might be spending money to get the same reply as my GP gave. I'll keep on with the gluten-free efforts and thank you so much for the good wishes and reassurance about nutritional changes, that means a lot just now

[GlowCoach Administrator in reply to FoggyThinker]

Just looking back at your previous post and replies that you had. Did you switch out the multivit for the Thorne Basic B complex? Your folate is pretty low in the range and getting that to a much better place alone will give you a bit more go. You need a product with methylfolate (NOT folic acid).

Dietary changes are quite the learning curve and initially take effort, thought and imagination as to what diet will be like having eliminated things. It really is a long term investment though and well worth the initial feelings of deprivation and awkwardness when eating out and asking for menu changes. I'm guten, dairy and soy free btw. Have slacked off it occassionally but always better when I stick with the programme. 😆

[FoggyThinker in reply to GlowCoach]

Thanks Jaydee - yes, I've binned the Solgar and started on Basic Bs, just one a day so I guess I'll stick with that for a while and then do another blood test in a few months (as the package says I could take up to 3 a day, I think).

You are so right about the learning curve! For example, I have beef brisket in the slow cooker right now... with guinness. Oh dear. I didn't even think of it and will have to do so much more!

[GlowCoach Administrator in reply to FoggyThinker]

It will probably take a few weeks to begin to stop making mistakes, all part of the learning curve. Helps if you sweep the kitchen cupboards/fridge/freezer and round up anything off the menu. I remember supermarket shopping, standing in the middle of the aisle feeling pretty lost with it all. You will get there.

Probably not a great idea to take 3 a day of the Basic B complex. B6 is toxic to nerves in excess. If you find you need more you can buy it separately.

[Regenallotment Ambassador]

what is the ‘normal TSH’ for you? mine only went as high as 5.5 at my most unwell. I’d batter your NHS GP with a print out of the NICE recommendations SlowDragon shares for all new Hashimoto’s members. One GP googled it and cross checked GP online and then agreed with me over the phone. She was grateful I knew what I wanted and why and had evidence and approved medical sources to justify. Dosing based on symptoms and body weight as a guideline in Hashi’s is definitely to our benefit. 🦋💚🦋

[FoggyThinker in reply to Regenallotment]

The one I was talking to today was really defensive, it was like she knew everything I was likely to say and had answered it before I said it. She wanted me off the phone but took up a lot of the appointment telling me why she thought my hypothesis was incorrect, and about how she'd get sued if she prescribed harmfully (even though I hadn't actually asked her to prescribe anything). I think I've been labelled "difficult" because I've been trying to find the answers and HRT hasn't worked that well for me, even though I have always been polite (although sometimes perhaps not very succinct!). I'll book the blood tests and ask them to tell me which ones she's asked for...

My TSH is 3.36 mIU/L (Range: 0.27 - 4.2) - may not be directly comparable as I think the range may be a bit odd, it was with Medichecks but a different lab to the one they usually use (GP didn't like that either); so it's somewhat high in the range.

I'll have a look for that NICE recommendation, I've seen a few different links around but not that one I think

Thank you as always - the Izabell Wertz books were your recommendation and I think will be very very valuable in my situation.

[Regenallotment Ambassador in reply to FoggyThinker]

oh the arrogance. I had this with one on the phone recently that wanted me to take ant-acids for my sore throat (4 years and counting), I explained I have LOW stomach acid, I can prove it, refused her offer and she was quite uppity but did eventually concede that watch and wait was better than being sicker (go figure) . Glad the books are helping, we have the cookbook out in the side in the kitchen, even hubby is going through it now when he is cooking looking for AI tips and exclusions. I had her newsletter for a bit but the marketing ’push’ was a bit much for me. I don’t need 6 hourly reminders that her special offer has been extended for my benefit 🤣 sending my best wishes, keep us updated, 🦋💚🦋

[Thalia56]

Hi FoggyThinker, I'm so sorry you're going through this. I started seeing one of the doctors on the ThyroidUK list almost a year ago; while the first follow-up appointment was somewhat (and rightfully) written in stone at either two or three months (can't quite remember) because I was starting on NDT having been on levo, appointments after that have been at my request.

Ongoing prescriptions with my doctor are a minimum of £20 per prescription, plus P&P for it to be sent to me, and if the prescription covers more than a month, it's pro-rata at £10 per month. I'm currently paying ~£55 for 100 tablets of Thybon Henning 20mcg T3 from one of the online pharmacies on Thyroid UK's page.

As far as switching back to the NHS, I haven't actually told my doctor about it, so for I'm continuing with the NHS alongside (though I haven't needed to seek treatment for anything in the last year, which has made it easier). From reading here, I think GPs vary in how they respond to the news, though I expect with some it depends how they're told. I plan, if I need to tell my GP, to show what my heart rate / blood pressure / temperatures were before T3 and what they are afterwards, giving them actual data to show an improvement.

[FoggyThinker in reply to Thalia56]

Thank you very much Thalia, this is really helpful info too

[turquoisea7 in reply to Thalia56]

Hallo, please excuse me squeezing in (not wishing to hijack); just seen you mention 'the online pharmacies on Thyroid UK's page.'; please could you tell me where to find this list? thank you.

[Thalia56 in reply to turquoisea7]

Of course (and you’re not hijacking!). It’s here: thyroiduk.org/if-you-are-hy...

I was a bit vague in my earlier reply as I couldn’t remember which pharmacy I get them from, but having looked at the list, the one I use is Chemist4U, even though the name was almost enough to put me off. I got quotes from a couple of the others and Chemist4U was marginally cheaper at that time.

[turquoisea7 in reply to Thalia56]

The name! yup I can see why. Thank you for this, much appreciated.

[FoggyThinker in reply to turquoisea7]

Not a problem for me at all, actually thanks for mentioning it - I'd actually missed the bit about the Thyroid UK pharmacies page (was a bit foggy after all the trauma with the doctor's appointment) so I'm really glad you highlighted it, thank you and thanks for the link Thalia56

[Thalia56 in reply to FoggyThinker]

You're welcome! I can't usually help much with the medical side of things, so am very glad to be able to help where I can.

[turquoisea7 in reply to FoggyThinker]

Is there anything other than fog?! 😀

[FoggyThinker in reply to turquoisea7]

It's just wall-to-wall fog 'round here at the moment!!

[SlowDragon Administrator]

Did you get ultrasound scan done yet?

Suggest you retest thyroid and vitamin levels again before booking any private consultation

[FoggyThinker in reply to SlowDragon]

Hi SlowDragon, thanks for replying - no I haven't, I am reluctant to spend more money and time on another test until I know who I'm seeing and whether they will accept this information (and whether it will be needed). I don't think I will get any further with my GP for my thyroid and even less likely to get the help I think I'll need with my adrenal function.

I have been thinking that I should redo the tests before seeing anyone, too, so thank you for confirming; my TSH was lower in the tests the GP did, I've been gluten free and dairy free for a good month and am feeling a bit less groggy in the mornings, so I think things are changing. I had a bad week last week with brain fog but it turned out that was probably because I was coming down with Covid

[SlowDragon Administrator in reply to FoggyThinker]

suggest you wait at least 2 months after Covid before retesting

A test in New Year perhaps

[FoggyThinker in reply to SlowDragon]

Thanks as always SlowDragon

[FoggyThinker]

Quick note to anyone else in a similar position - I've just had a really positive call with the private GP I selected and would be more than happy to pass on details via PM.