Had a telephone GP appointment to discuss my latest NHS bloods (Medichecks weren't good enough, apparently) and wasn't looking forward to it after a row with my GP last week when she took offense at me knowing more about thyroid disease than she did.
I was surprised to get a call from a different GP that I didn't know existed. We began discussing my results when she made a comment about my antibodies being indicative of Hashi's - I nearly fell off my chair. My own GP didn't know what it even is.
I commented on her knowledge and she said she'd recently been diagnosed with Hashi's and we discussed NDTs, as she'd taken Armour and didn't get on with it. I asked if her if she's had her adrenals checked, she didn't know the relevance of that, so we had a chat about that and she said she'd get hers tested and try NDTs again at lower increments. I advised her that this site was a font of excellent info and she said she'd have a look.
I felt such a boost talking to a GP that knew what I was talking about and listened and asked questions when she didn't. I told her how important that was and how much so many of us suffer with close-minded GPs and endos. She said she believed in treating patients in the round and looking at symptoms as well as bloods. I told her that I thought I loved her and we had a good laugh.
I told her she was so rare a GP that I would write about her on here. She took it all with good humour and is very interested in researching this topic, as she's just begun looking into it all for herself.
I hope I didn't imagine it all - it's almost too good to be true...
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Nico101
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I suspect that most doctors would get NDT for themselves if they needed it - actually my own comsultant recently mentioned that she would!
Very interesting that years ago she told me not to bother with NDT because I'd have to pay for it myself. Then when she went on a brief tangent imagining she needed hormone the issue of cost wasn't even mentioned!!
Wow! Well now that’s the kind of relationship we’d all like with our medical professionals! Wow! Imagine 2 grown ups discussing a way forward that is not only beneficial to the patient but also educated the DR and possibly helps them too? Wow! 😊
I wonder if she’ll go private to get better treatment for herself. Did you mention about the DI02 gene test to her to see if she has a conversion issue T4 to T3. My GP didn’t know about the gene test and was very pleased when I showed him my positive result. This reinforced my need for T3 medication. Before I took T3 medication my cortisol was really low. Now I’m on it my Cortisol has shot up from 150 at 9 am to 466 at 9 am. T3 certainly helps cortisol.
I hope you both get great comfort from helping each other.
Thyroid UK and people on it are so helpful. Without this forum I’d still be very unwell. It’s helped me more than any Dr has.
McPammy- does T3 really help Cortisol levels? I was diagnosed with Adrenal Insufficiency 2 years ago and have struggled to get my cortisol levels up! My cortisol levels even after an ACTH are always <27!! I’m also struggling to get my HC down below 25-30mg a day, and I’d love for it to be down to 20mg a day 25mg at the max!
T3 can help raise cortisol levels, but it can also crash them. It is a complicated business. Paul Robinson has several books on the subject of T3 and it might be worth having a look at those to see whether T3 might suit you. If you already have adrenal insufficiency it can make things worse.
T3 really helped me. I had a synacthen test but passed by a narrow margin. Do you have Addison’s then. I’m not sure if it’ll help if you havenAddison’s. I noticed a big improvement with my cortisol in month one. It went from 150(155-607) to 391 to my amazement. Also ive since noticed that if I get my Cortisol bloods at 7.30am it’s much higher than at 9am. Maybe my high is at 7.30. How long have you been on hydrocortisone. The longer you are on it the bigger the danger your adrenals have gone to sleep. They can always be woken again I believe but you have to do it slowly. Maybe add a small dose of T3 and reduce HC slightly. Have you seen any private Endocrinologist. For my recovery after the NHS not helping I went to see a renowned private Endo in Oxford. Whereabouts are you. He is truly an expert. If you want help coming off HC and introducing T3 maybe he is your man to guide you.
Moving away from HC if you have Addison’s could be dangerous. Have you had a day curve or synacthen recently.
My ACTH was 0.5 (2-11) and my cortisol was 68(155-607) when I collapsed and was taken to hospital. This i now know was due to my T3 being low at 3.9(3.7-6.0). Believe it or not the hospital Endocrinologist said I had no Endocrine issue after I stimmed the synacthen test then sent me to neurological ward. It was Endocrine. It was T3 I needed. But I went through a year of hell trying to get it .. only when I went private did I get the correct diagnosis. Also the DIO2 gene test sealed it.
LuluCops, What McPammy mentioned is more about adrenal fatigue than adrenal insufficiency. Down regulated adrenal function when we're ill is more the otherwise healthy adrenals getting overwhelmed by the high demands on them during illness and not being able to function effectively.
Cushings or Addison's disease are due to a tumour or other long term structural issue with the adrenal glands which means they are not able to function effectively.
For the former improving thyroid hormone levels, nutrient levels, and perhaps supporting them for a while will hopefully return them to full working order (although some people need to supplement long term).
With adrenal insufficiency I don't know enough to say whether they can ever fully recover, or if things like hydrocortisone are needed for life.
It gets confusing, too, when there are so many different names for it. Dr P used Low Adrenal Reserve. Then there is secondary adrenal insufficiency - which I believe is the same thing as LAR and adrenal fatigue.
It would help tremendously if Drs and people writing books about it picked a name for it and stuck with that. And I believe they have a couple of other terms for it in the US.
I knew mine wasn't Addisons, as it was in response to a protracted period of severe stress. I then got better once the stress improved... then after 18 months of terrible stress recently, I'm worse than ever.
That said, after 6 months of tweaking my treatment, going LCHF, buying so many supplements I need an extra room to keep them all in, my cortisol has risen - although not at the times I would like - so I'm off prednisone (went down to half for a week then just stopped) and take one Adrenavive first thing, as my cortisol is low then.
Just started taking Holy Basil 2 nights ago to lower nighttime cortisol, as it's slightly too high, and I sleep like the dead! Everything I read about it is right! Amazing stuff.
I'm on 1/2 a grain of NDT - due to go up 1/4 grain in a few days - and hope once I'm on the correct dose my symptoms will go - or at least improve.
Anyway, my point is, I was on prednisone 5mg for about 20 months and came off it easily.
My LDN arrived this morning, so excited to see how I get on with that.
Its a very confusing field, and it's hard to find any good consensus on different treatments. The thing the NHS will treat is adrenal insufficiency (if I understand it right), which is Addison's disease (I'm not sure if Cushings, overactive adrenals, can also be called insufficiency), then I think all other terms are all talking about something a bit different, which is probably roughly the same thing I was calling adrenal fatigue. Although there are probably minor differences.
I had the impression for a long time that Addison's was just an extreme form of adrenal fatigue and the one could lead to the other if it got bad enough (like diabetes and pre-diabetes). But my understanding now is that Addisons is a distinct disease, similar to Hashimoto's, in that most people who have it are autoimmune, but you can also have it from damage to the adrenals glands caused by other things.
My assumption is that secondary adrenal insufficiency would be similar to secondary hypothyroid, in that it's not caused by damage to the adrenal gland itself, but by an issue in the signalling that tells the adrenals what to do. I believe the pituitary is responsible for this just as it is for the thyroid. That's just an assumption, tho!
I have Secondary Adrenal Insufficiency, which isn’t anything like secondary hypothyroidism at all, neither is it anything like adrenal fatigue. It is a condition in itself just like Primary Adrenal Insufficiency (Addisons Disease) it is now all called Addisons Disease. With both conditions Hydrocortisone is required for life. Secondary AI can be caused by many things, long term steroid use, I.e for asthma and such, a pituitary tumour, ACTH issues, mine they don’t know, they tried saying it was due to my using morphine long term, but I hadn’t been on it long and I came off it when they said it was causing it, because they said that my adrenals would get better. They never have, if anything they’ve gotten worse! And I have all the symptoms of Primary AI, even down to the ACTH response when doing the Short Synathcen Test. My cortisol is always very low, <27nmol/L.
Cushings Disease is a different condition altogether, this is when there is too much cortisol produced. Unfortunately I have had to become my own advocate and expert on this too as like with hypothyroidism and Hashi’s there aren’t many good endo a out there that know much about AI! xx
I didn't get a chance to go into too much - we were there to discuss my bloods ATEOTD - and we still only had the standard 10 mins - although we went over by a bit.
When I get the cast off my arm I want to go and see her. I think I will ask for a longer appointment. do I need an excuse ready for when the harridans - sorry, receptionists - interrogate me when I try and arrange it?
She can become a member of Thyroiduk.org.uk who are at the forefront of trying to change attitudes of the 'professionals' as many only look at the TSH result.
It makes a change when your doctor tells you she also has hashi's. She can also become a member of Healthunlocked too. It will be a fabulous way for her to be able to pass on the knowledge from many members to her hypo patients. If she went 'private' she'd be inundated.
We've to take doctors attitudes as we find - they either know a lot or very little i.e. believe TSH has to be taken more notice of, instead of the FT4 and FT3.
It just shows that all these medics are uninformed and unsympathetic and prejudiced because they have no idea what hypothyroidism actually does to a body, what it feels like and yet they still refuse to believe their patients! All endocrinologists should be visited by the hypothyroid curse before they are allowed to practice their medicine.
You are so lucky, my doctor knows nothing and l have to tell her about my thyroid probs. I have even taken articles to her about the problems, she has now retired young, l think it was all too much for her, when l asked her questions she just used to shrug her shoulders and smile. It took me five years for her to agree to a referral to see an endo, but so far that doesn't seem to have made much difference. With thyroid probs you just have to keep going and take each day as it comes
I'm so happy for you, and more than a tad jealous. I wonder if it's possible to register with a GP in Bognor when living elsewhere in Sussex...
I know it could never happen due to GDPR etc., but wouldn't it be wonderful if all GPs and consultants had to list their own ailments, so that we could search for somebody "who understands" a particular condition when booking medical appointments.
CONGRATULATIONS you have indeed struck gold. Very interested that she tried Armour first. No fiddling around with Levo for years if not decades for her. You are very lucky indeed.
Just as I clicked to open your post, I had to leave the room. I did, however, note the headline and reacted: "Oh yes!" (And when I got back and read it, the post was not a disappointment. Congrats!)
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Only TSH
What to ask my GP???????
thyroid has atrophied / hashi's diagnosis
*****Update ****** Faulty DIO1 & DIO2 results, helpful hints on how to persuade my Gp Levo not working too well
