Functional Dr vs Endocrinologist

[Pastacat]

Having been recently diagnosed with hashimotos and coming to the realisation my GP will not do anything to help manage this and refuses necessary tests, I now know I need to go private. I’ve heard an Endocrinologist is just as useful as a GP and functional is better. Any thoughts on this? Any functional doctor recommendations? Thanks 😊

[Buddy195 Administrator]

Welcome to the forum Pastacat,

So we can offer better advice, can you tell us more about your thyroid condition, eg when you were diagnosed, ongoing symptoms, current medication & dosage(if commenced), plus blood test results (with ranges in brackets) for:

TSH 

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health: 

thyroiduk.org/help-and-supp...

I would recommend getting all the above tests completed before considering a private practitioner. Please do not start supplementing any vitamins until you have tested key vitamins first. Once you have these, post levels (with ranges) on the forum in a new post for further advice and support 🦋

[Jaydee1507 Administrator]

Endocrinologists can often be disappointing as although hypo comes under their speciality its rare to find one that knows how to make us feel well.

What treatment are you currently on and what were your latest results? Sometimes with a bit of tweaking you can save yourself a lot of money just posting results here and following advice on vitamin supplementation.

You can email [e-mail] for a list of Endocrinologist and specialists including some functional doctors.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

[Pastacat in reply to Jaydee1507]

Thanks, unfortunately my Drs are clueless (trying to tell me T3 converts to T4 not the other way around) and flat out refuse to do any test other than TSH and T4 hence medicating off TSH which we all know is wrong. My antibodies are >999 and I’m on 125 of Levo as my last test showed a swing from TSH of 0.1 to 36. I have another TSH test in 2wks where I suspect they will see TSH has reduced and drop my Levo.

The Dr just looks at TSH and medicates off that. I also can’t absorb B12 or Folate but agin the Dr will let me crash below range before doing anything. My D12 is also at the bottom of the OK range so it should be higher but until it’s under I get no action.

I’m 1 week into AIP and have 2 session with an Endocrinologist via insurance and have found a potentially good knowledgable functional Dr but just trying to figure out the best way to approach. Either way I will have to get private blood tests, it’s just a question of then convincing the Dr or Endo I may need certain meds that they won’t currently give me based off of private tests. The Dr has already said he will not interpret private tests-but won’t do them himself! I can’t move Dr surgery due to catchment and ever Dr I’m my surgery has said the same thing. Hence my only route is to pay private.

Thanks for the email address, I will give that a go!

[JAmanda]

just fyi it was when I told my doc I was going to see a functional doc that they said but what do you think we are? I said well they look at me holistically etc, the whole person, and Gp said ok but that’s what I do - she then asked me all the imaginable Qs and result was a trial of levothyroxine. Maybe I was lucky but the prompt that they weren’t seeing me as an individual with all sorts of aspects was a good one.

[Pastacat in reply to JAmanda]

thanks but unfortunately my Dr are clueless (telling me TSH is the only reading you need and T3 converts to T4 etc. didn’t like when I explained to them why they are wrong!) I’m on Levo now but based on incorrect understanding of how to medicate (see me long reply above!) so my only option is to go private.

[JAmanda in reply to Pastacat]

go for it. I’ve subsequently self sourced lio and tested and upped meds etc to get and keep myself well. It’s all on us in the end.

[ainslie]

my experience is it can be very hard to find a good functional/hormone doc, there are quite a few chancers out there, certainly in the UK anyway. Endos might probably keep you alive or in range but don’t try mentioning the optimal word to them. Would love to hear if anyone knows any good functional/hormone docs anywhere , pity Barry Peatfield and the likes are retired.

[Pastacat in reply to ainslie]

It’s crazy isn’t it that so many are affected but it’s so hard to get the basic help we need. I’ve asked for the last year for a T3 test at the very least and the Dr said the UK don’t test T3. I disagreed with him and he then said the NHS don’t test T3. I disagreed with that as I know for a fact some areas up north have T3 as routine and it says in the NHS guidelines that T3 should be tested to get a full picture and to understand conversion. He then said that he can’t authorise T3 and that I should stop googling things. At that point I gave up.

[ainslie in reply to Pastacat]

sounds very usual sad story, but don’t give up. I thing in the past after mega begging I got Ft3 on NHS in Scotland via GP , he was a bit disinterested in the results, ie I only understand TSH as I studied it for 5 minutes in med school 30 years ago. I use the private labs these days but shouldn’t have to.

[MichouVP in reply to Pastacat]

Dear Pastacat, I was told the same, repeatedly. BTW that's medical gaslighting to tell you to stop googling! Been told that too. NHS does test T3 if necessary. But if that GP is only looking at your TSH or T4, no, its nowhere near a complete panel - which actually has about 8 tests in it. Endocrinology and Thyroid issues are so complex, the GP has no clue. I suggest you find another doctor. Keep doing your own research. I go in with printouts from peer reviewed research in medical journals and lay it all out on the bed in the GPs office like i'm in a pitch presentation at work and build my case showing all the reasons just looking at TSH and T4 doesn't work. See my post below. I finally got T3 tested privately and it was way below range. I went back to the NHS GP to have it tested a few months later and because they'd seen I had had a test privately that showed low T3 they HAD to test me. So its not true what that doctor told you. NHS does test of T3. But guess what? My NHS labs came back and my T3 was at the very bottom of the range, like 1 point within range, and because of that they refused to refer me to endocrinologist because I was supposedly 'within range'. And then I read that NHS ranges are very' wide' ranges so they don't have to treat anything but the most severe cases because it would otherwise be too expensive to treat everybody and it would tank the NHS. Nice! So they just let us suffer. NHS is great is you break your leg, get bronchitis or a UTI but anything chronic you can forget it. My heartfelt suggestion is to find a functional medicine doctor. If there isn't one near you, there are many telehealth online practices. Google! haha

[CornishChick in reply to ainslie]

Hi I just wondered if you ever found a good FD? If so do you mind sending a PM with details please? Thank you.

[ainslie in reply to CornishChick]

No I havnt, there are plenty around but having been around the block a few times I am not so easily convinced by their ability to make useful change, but, I am sure there must be some out there, just a matter of finding one

[MichouVP]

You heard absolutely correctly, GO FUNCTIONAL!!!

No insurance doesn't cover it and yes you have to pay out of pocket but it will save your life. I've wasted 3 years of my life practically bedridden. I still feel awful but I made the switch to Functional finally and have learned some very interesting things about neurotransmitters, adrenals and epigenetic that ALL affect the Thyroid big time. Traditional (Allopathic) medicine are not taught any of this in medical school. Its almost like a whole different discipline, its Martian to them. In my experience traditional GPs, Endos and even Neuros do all the same old basic tests, old knowledge and you get nowhere because they're operating in a silo by reading tests results only, don't look at the whole body and what else might be going on. Traditional medicine puts a band aid/plaster on a symptom, its not actually treating 'the patient'! They get a kick-back from Big Pharma every time they prescribe or they're governed by the NHS and giving you a Free T3 test is beyond their pay grade so computer says no in their little GP office. They throw a pill at you made of synthetic chemicals and send you away. They're not there to figure out why you feel awful or why your thyroids are way off. If you don't convert T4 to T3 for some reason, that Levothyroxine will do nothing to make you feel better. There is no investigation as to why you don't convert. They have no other training but the basics and the general numbers of what the 80% of general population that T4 does work for. But if you're part of the 20% with some unusual genetic stuff, traditional medicine will never help. Functional or Integrative Medicine is all about finding the root cause, and treating that so the symptoms and the illness go away and you can recover. My first visit with my functional medicine doctor was 2 hours long. Think about that compared to the 9 minutes you get at your NHS GP. NHS GPs get paid by how many patients they see thus the minuscule time or care they give you: 9 minutes. In 9 minutes they're not spending time figuring out what could be going on with you. For them its like, ok Next! In this 2 hours at my initial Functional Medicine consult I felt heard, I felt she was going to get to the bottom of it, i immediately trusted what I was paying out of pocket for. In Functional Medicine, they look for why they thyroid is off and you feel awful. They look for if its a vitamin deficiency, an adrenal insufficiency, a pituitary issue, then they go further to test for things like MTHFR gene polymorphism which affects methylation (you'll have to look that one up, its really important), GI tract nutrient absorption issues or heavy metals accumulation deep in the system that, for example, inhibit the pituitary's release of TSH or ACTH stimulating hormones for thyroid, adrenal, etc. Its all linked. They order completely different lab that traditional medicine that give a much bigger in-depth picture of your system functionality. Then based on the test results and how you feel, they'll put you on a protocol to increase what is deficient, remove what's harmful and help you actually heal. If you need meds they'll prescribe meds. But if its treatable naturally with food or supplements, instead of putting chemicals with side effects that hinder other organs or mechanisms in you r body, they isn't it better to go natural and not mess up homeostasis if you don't have to. Synthetic T4 and T3 don't 'heal' your thyroid dysfunction. They just give you extra fake hormone that may or may not relieve your symptoms. Its right for some with their own very specific cause for they're thyroid imbalance. One size does NOT fit all.

If our thyroid is out of whack caused by something else, adding T4 and/or T3 is never going to make us feel good long term. I discovered this the hard way. Levo and Lio, for me do very very little. Turns out, I find out 3 years later, I have adrenal insufficiency, MTHFR and heavy metals lodged deep in my system that aren't letting nutrients or supplements in at the 'cellular' level. So for me, blood tests are an incomplete picture bc they don't show if and how much exogenous supplements/meds my cells and mitochondria are able to let inside of them/absorb. Heavy metals block this. So my bloods will show decent levels of T4/T3 and low metals, but at the cellular level its the opposite.

So no, unfortunately the GP and endo aren't testing you at this level. I don't know why insurance doesn't cover it either if its medicine. Anyway. For me GPs are like medicine for kindergarten. Functional or Integrative Medicine are the rocket scientists. Wishing you all the very best getting better and on whichever path you choose.

[Wua13262348 in reply to MichouVP]

Could you direct message me the name of your functional medicine person you are happy with, please.

I have the name of someone from internet research who looks competent and has worked / collaborated with Ben Lynch of "Dirty Genes" fame , but i am hoping I don't have to resort to that, but I may have to. She has also personally suffered with CFS. Functional doctors, herself included, are commonly testing genetically and I have done this already, but I believe she would require me to test a 2nd time to get the info in a format she is used to using. I agree with what you have said above, as regards main stream medicine and G.P.s .

I have recently presented my G.P. with lots of proof of a CBS mutation that is actively causing various health issues ( including Hypothyroidism and CFS) , which I had previously thought was Marfans Syndrome, which can only be differentiated from CBS, by genetic testing. I had never heard of CBS. It was the up-regulation in selenium which was the key to finding it . I provided proof of deficiency in glutamine(leaky gut guaranteed) and arginine, which the CBS mutation causes. I have asked for an urgent referral to adult metabolics and genetics. I gave him the results of a neurometabolic gene panel, an aortapathic gene panel, a very dodgy thyroid genetic panel, an amino acid (26) blood test, proof of up-regulated selenium by blood test ( caused by the cbs mutation) and a list of a variety of medical complaints as supported by my genetic results, which the cbs mutations are causing. I have heard nothing. He diagnosed vasculitis at the last appointment ( previously misdiagnosed as a fungal infection), at which, I left the above paperwork with him, to read at a later time. All appointments are 10 minutes, one problem only per appointment. The CBS mutation is the cause of the vasculitis.

A remark made by Jaydee a few days ago to a forum member gave me a eureka moment for this. She pointed out(she has EDS), she has a connective tissue disease involving the blood vessels. CBS mutations and Marfans and EDS are connective tissue diseases involving the blood vessels.

Grateful to Jaydee for the unintential nudge which joined the dots for me at exactly the right time re. the vasculitis.

[Pastacat in reply to MichouVP]

Thankyou for both your posts. Hearing your comments and others just confirms I’m not going crazy with what I think and feel vs what the GP is telling me. I had an initial chat with a functional Dr and it was the first time I’ve heard anyone in any kind of medical profession say T3 must be tested. She gave me confidence that she at least knew more than the GP and would do full thyroids, DNA, intolerance and disease tests. The struggle is then getting a GP to accept someone else’s test results should you need medication as the FD cannot prescribe. I have been told to use one that is IFM certified but a lot aren’t. I guess so long as they have the right experience that will be ok. I have 2 consultations with an Endo under insurance but thinking that will just be a glorified GP session as they won’t do all the tests above. Next step is to find the money to get all of those tests done privately and based on results, prepare to convince the Endo/GP to provide the necessary meds!

[CornishChick in reply to MichouVP]

Just reading your post with interest. I hope you’re feeling better. If you can recommend your FD, do you mind sending details by PM please? Many thanks.