Good morning so I’ve now received my letter after my consultation with he endo.
He has a shed load of recommendations a couple of which I’m unsure of and also there’s an awful lot of money involved in making these changes which I just can’t keep up so this morning I’ve copied it all off including his letter to the gp and I’ll take it down with a cover letter to gp and see what testing he can do on nhs.
Firstly he wants me to follow a Keto diet I feel crap enough without inflicting Keto flu on myself and I don’t think it’s a good idea,I will cut the carbs and the rubbish out of my diet but Keto just isn’t for me.
The supplements he has suggested for support cost me a small fortune to order online yesterday and I only bought half of what he suggested hoping I’d bought the right stuff for adrenal support etc.
I need to have blood tests done again but two of them need to be venous which I’ve no way of doing and again this is running to hundreds of pounds.
He has arranged melatonin and b12 injections via a private pharmacist in case gp won’t prescribe that’s another couple of hundred pounds but I can’t Inject the b12 unless the nurse is available to do that which I don’t know.
Because of lockdown I prob won’t be able to get sst test done so he plans to start me on hydrocortisone in 2 weeks time after I’ve did all these blood tests and have started the melatonin.god knows how much the hydrocortisone will cost.
He will then look at introducing thyroxine as he’s unhappy with t4.
He then wants me to go back on hrt which I stopped due to previous side effects and this time wants me to also take progesterone despite my saying I’d had a hysterectomy years ago and none of meno consultants had me on progesterone before.im really not keen on restarting something that made me feel so unwell previously especially at my age now.
We then have to get the pituatory checked when lockdown eases up again I’m unsure what that involves.
I have another telephone consultation in 2-3 weeks,again more money I can Ill afford.
I know I should have weighed all this up before I went private but I’ve been so desperate to get help and get a diagnosis because deep down I knew my head injury was at the route of all this and this morning I feel so sad and defeated and just overwhelmed by everything.Ive gone from a happy high yesterday to a feeling defeated by costs and fear of unknown today.
I’m hoping that this new gp I’ve never seen doesent get mad at all the stuff the endo has asked him to do and will work with me on the nhs to try and help,I’ve said this in the cover letter. I’m kind of hoping that he’ll either call me or email me and say yes I can do the melatonin and b12 injections or maybe give me high dose b12 until it’s safe to start the injections after lockdown and maybe even refer me to an endo on nhs to take over my care based on private endos recommendations.
Any thoughts or advice please guys I know it’s a big ask but am I just being a drama queen and expecting too much from everyone.ty xx
All I will say is he seems to be throwing a lot of treatment at you and hoping something will work. Also do you have to have all these expensive tests done privately? Why don't you see if the NHS will do them for you? I have paid privately to see Consultants in the past and then had all my treatment on the NHS.
I was told you don't need to take progesterone if you have had a hysterectomy. I still have my uterus but have never taken HRT because my mother died from breast cancer. I do realise some women do need it but I feel ok at 60 and I went through the menopause when I was 55. Do you have symptoms that indicate you need HRT?
Just adding I agree with you about the Keto diet. I always try to eat a good diet with no refined sugar but it has lapsed since the lockdown and I have been scoffing a few chocolate bars through boredom.
Hi Lora I was on hrt for a long time about three years ago and I tried a few different ones pills,patches,gel and saw 2 top consultants and we agreed that because of the side effects it wasn’t for me and I stopped it about 12 + months ago and I’ve been managing fine I’m 63 next month so I really don’t want to go back there I’ve enough going on with all the adrenals and thyroid stuff.
My diet is pretty good I’m gluten and lactose free now as much as possible but like you say I’ve been hitting the chocolate and crisps mainly because I’m so stressed all the time so I will def cut that stuff out now and stick to a clean diet.
I’m going to try and see if this new gp will accommodate me and do as much as I can on nhs but until I get the letters in I’ve no way of knowing how cooperative he’ll be.
The endo is just lovely and so easy to talk to but like everything it’s at a price isn’t it.x
I saw a private dermatologist for my hair loss 12 years ago. Lovely consulting room with refreshments and fresh coffee if I wanted it. She told me I had female pattern balding WRONG! I had a suppressed TSH of 0.002 and Graves' disease. What a complete waste of £150 ... I feel like going back to The Spires and asking for my money back! I am not saying your private doctor isn't a good one but if you can get the NHS to treat you for free I would do it. We do after all pay taxes for the NHS and deserve free medical care imho.
Just to add the dermotologist got me to purchase some expensive Regaine ... I never used it because I was finally diagnosed as having an overactive thyroid. I still have a full head of hair so I don't think I have female pattern balding yet.
Yes I know what you mean I’ve seen many consultants privately since the head injury probably around 8 or 9 now and had many tests done.most of them have been lovely but no joined up thinking so it’s been such a relief to find this endo who knows his stuff and agreed right away that all this is as a result of a brain injury.that in itself was such a relief but if the costs keep spiralling it just makes it impossible for me to get a resolution unless the nhs will jump in and take some of this pressure off me.x
No Lora he doesent but he has asked very nicely in his letter if gp will help with prescribing and b12 injections,I think he’s just covering the problem of accessing things during lockdown by giving me private scripts and trying to do the blood tests via medichecks and not realising that we are having to eat into what little money we have meantime,
I will contact his secretary later and explain my concerns now,I don’t want to alienate him in case the gp is like all the others I’ve had and won’t cooperate,I had at one stage to go via the opticians after the head injury to get a referral to eye hospital and ask them to refer for the brain scan because I was in such a mess I’d hit the concrete so hard my jaw and eye had all split and left me with terrible eye problems.its been one long battle after another with nhs doctors and their bloody budgets.x
Perhaps if the GP see he is asking for all these tests they might make enquiries to ask whether some of them can be done on the NHS?
I recently contacted my local private hospital to ask about having a cyst removed and they wanted £250 just for the consultation so I dread what the cost of getting it removed might be. I am worried because it is near my eye and had doubled in size over the last 2 years. My GP said it was just cosmetic but I am worried it might one day block my vision.
Firstly he wants me to follow a Keto diet I feel crap enough without inflicting Keto flu on myself and I don’t think it’s a good idea,I will cut the carbs and the rubbish out of my diet but Keto just isn’t for me.
There is nothing to stop you approaching a keto diet slowly, and stopping when you think you've gone far enough. Start off with a low carb, high fat diet which includes 100g of carbs per day and reduce that number over a period of weeks or months. You may find you feel good at, say, 75g of carbs per day or 50g of carbs per day. Keto generally tends to be below 20g of carbs per day, which might not be feasible for someone with a thyroid problem.
As far as keto flu is concerned there are ways and means of dealing with the problem quite quickly. See this link :
Hi humanbean thank you for your advice he wants me to start on 20g daily so I think that’s what’s freaking me out.I already eat quite I prefer mashed veg with my main meals rather than chips or potatoes rarely have pasta probably have too much rice will I will cut down but I think the 20g will be a difficult one to achieve I will have a look at the link you gave me thanks so much x
I don't think many people with thyroid problems do very well on ketogenic diets. For some reason I don't understand and haven't studied, people with thyroid problems seem to need some carbs for T4 to T3 conversion to work.
There are members on there who buy their own B12 ampoules without prescription, also needles, syringes etc and inject themselves. There are videos on Youtube that teach people how to do it.
I've never heard of melatonin injections. I have bought melatonin tablets from Ebay before. They are like B12 and thyroid hormones i.e. they can't be bought in the UK but they can be bought abroad or online and imported quite legally.
One thing I would suggest, if you decide to try melatonin, is that you buy the smallest dose you can find. I bought 3mg tablets and I cut them into smaller pieces. The ones I bought don't cut easily, and tend to break into multiple pieces. I just use them anyway. I tend to take less than 0.5mg - 1mg per dose, and it works well. The way I use them, one bottle of 3mg melatonin will probably last me several years.
Melatonin is one of those things where the effect wears off over time if you take more than a physiological dose, or take it too often, and this should be avoided. I did read about one total wally who pushed his dose higher and higher and ended up taking 75mg per day and still couldn't sleep. In comparison, the highest dose of melatonin pill that is available is 10mg. The person I read about taking the 75mg was someone who, I would guess, will never fall asleep naturally ever again. With melatonin less is definitely more, and with the right dose you will still be able to fall asleep naturally.
Personally, I only take melatonin about 2 - 3 times per month.
Brilliant advice as usual humanbean , but it is advised to let a Dtor or Nurse do the first B12 injection in case you react to it. Hidden you will get all the information about self-injecting B12 from the PA Society forum on here as mentioned by humanbean. I have been self-injecting for a year now.
Hi nightingale-56 sorry I missed your post earlier.
I am a member f the PA forum and have had some advice from members previously and even got as far a buying the b12 from Germany and all the needles etc from Medisave then I bought the auto injector,I just can’t do it the fear just takes over so I’m hoping that once I can get the first lot of b12 injections via gp the nurse will teach me how and where to inject and I can try.thank you for your advice xx
Do you have a partner or relative or offspring or friend who could learn to inject you?
My husband learned how to inject me in the backside when I was doing IVF, and I think B12 injections are probably simpler than injections into the bum. I got him to learn because the alternative was getting up at the crack of dawn every day and going to the surgery.
Yes iMy husband would happily stab me with a needle lol.he has already offered but everyone says best to get first injection done via nurse and you just know I’ll be one of those who has a reaction to the stuff just to complicate things even more.ty x
Hi it’s melatonin tabs sorry starting at 2mg then working up to 10mg if necessary.
I am a member on that forum thank you.good advice I will have a better read later I need to go now and try and get these letters into gp somehow lol.many thanks xx
Going up to 10mg melatonin is absurd, in my opinion. Even 2mg is too much. You really should halve them. And make sure that you are in bed ready to sleep before taking your dose and then turning the light off.
Hi humanbean sorry I misread the print it’s 2mg slow release melatonin Increasing to 4mg if necessary to be taken 1 hour before bed.I will read some more n your suggestions thank you x
Do a web search for "physiological dose of melatonin". There are lots of links suggesting the best dose is about 0.3mg of melatonin, and that this dose works better than higher doses.
First of all, did he give you reasons for all these 'treatments'? Why he's suggested them and what they're supposed to do for you? The keto diet, for example, what's that for? As humanbean said, hypos do need a certain amount of carbs - the exact amount differing from person to person - to be able to convert T4 to T3.
The supplements he has suggested for support cost me a small fortune to order online yesterday and I only bought half of what he suggested hoping I’d bought the right stuff for adrenal support etc.
Can you tell us exactly what he suggested? And, what you bought? Did he do any testing before suggesting them? You should only take what you need, and this idea of 'support' can be a false one. What some people call 'support', others would call 'stimulation', which isn't always a good idea. And, I agree with what Hidden says about only starting one thing at a time. That is very important.
I need to have blood tests done again but two of them need to be venous which I’ve no way of doing
In your place, I wouldn't start anything without testing first, you need a base-line, if for no other reason.
Why the melatonin?
Because of lockdown I prob won’t be able to get sst test done so he plans to start me on hydrocortisone in 2 weeks time
He's going to start you on HC without proper testing first? HC should be a last resort, it's not to be taken lightly. How much HC? And, how did he tell you to take it?
He then wants me to go back on hrt which I stopped due to previous side effects and this time wants me to also take progesterone despite my saying I’d had a hysterectomy years ago and none of meno consultants had me on progesterone before
Why? What would be the advantage of going back onto HRT if you've already stopped it? But, actually, it was the other consultants that were wrong. Oestrogen and progesterone should always be taken together.
We then have to get the pituatory checked when lockdown eases up again I’m unsure what that involves.
I would have thought that should be the first step, not an after-thought. Without doing that, you don't even know what you're dealing with. Or have you already been diagnosed with Central Hypo?
Usually, checking the pituitary involves a brain scan and blood tests for other pituitary hormones.
I really can't help thinking he's putting the cart before the horse, here, and you need to ask a lot more questions before doing anything.
He will then look at introducing thyroxine as he’s unhappy with t4.
I'm sure this is just a typo, but thyroxine IS T4.
Hi greygoose I’ll try my best to answer.he said he suspects I have reactive hypoglycaemia so has suggested a low carb diet.
He said my sleep hygiene is dredful with the multiple waking up and this will effect normal cortisol secretions so it would be best to treat the nocturnal pathology with melatonin then repeat a pre 9am cortisol test.
He said then if there is any doubt about the result he would give me a trial of low dose hydrocortisone in 2 or 3 weeks.
He said it would be useful to have a low threshold to rule out central hypo if after addressing the other issues I have persistently low - normal ft4 with ongoing unexplained symtoms..we must ascertain the status of her hypothalamic-pituatory-adrenal axis before contemplating treatment with thyroxine if it is needed.
in reply to
I think now if he had been an nhs endo I may not have questioned so much of this because I panicked at the idea of funding everything on my own so maybe he’s completely on the right tracks but I’m getting stressed over the costs involved and not rationalising things right I hope this is all it is.x
I’ll try my best to answer.he said he suspects I have reactive hypoglycaemia so has suggested a low carb diet.
OK, but you don't have to go full keto to get a low-carb diet. And, remember that hypos need carbs to convert, so don't go too low.
He said my sleep hygiene is dredful with the multiple waking up and this will effect normal cortisol secretions so it would be best to treat the nocturnal pathology with melatonin then repeat a pre 9am cortisol test.
Multiple wakings are often caused by abnormal cortisol secretions, so I would have thought it would be better to sort the adrenals before adding melatonin into the mix. Has he done a 24 hour saliva cortisol test? 9am serum cortisol tests are not very reliable, and you have no idea what happens during the rest of the day.
He said it would be useful to have a low threshold to rule out central hypo if after addressing the other issues I have persistently low - normal ft4 with ongoing unexplained symtoms..we must ascertain the status of her hypothalamic-pituatory-adrenal axis before contemplating treatment with thyroxine if it is needed.
Sorry, can't make sense of that. A low threshold to what? You rule out central hypo by doing other hormone testing and a brain scan.
As for 'normal FT4 with ongoing unexplained symptoms', has he tried testing the FT3? It's low T3 that causes symptoms, not T4. And, if you're a poor converter, then it's liothyronine you need, not thyroxin.
Ascertaining the HPA axis is done by hormone testing, not stuffing people full of hormones and supplements. How is he planning to ascertain the HPA axis?
Yes ve had the saliva tests done two lots,one medichecks and one regenerus to get the Dhea result and the endo has all this info including my thyroid tests by medichecks and my mma test I’ve been very thorough with the help of the forum members because of all the dismissive stuff from previous gps and consultants I wanted to make sure I gave this endo as much ammo as I could,it felt like a last ditch attempt for me to get a diagnosis.
OK, so from those results he knows the status of your HPA axis. What needs to be ascertained is whether the problem comes from the adrenals themselves or the pituitary. which is why I think the pituitary test should be done before any other testing.
Just had a look at your blood test results from three months ago, and your FT4 is very low. But, your TSH isn't very high, so another reason why pituitary testing should be done as a priority.
Your vit d, B12 and folate are also low. Do his supplement suggestions include B vits?
There is a supplement called 'Methylation'? I thought that was a bodily process.
Energy Multiplex for adrenal support
Oh, I really hate these multis! They are rarely a good idea. Have you looked at the ingredients?
ginseng - an adaptogen. doesn't suit everybody. adaptogens are supposed to normalise hormonal production: raise low-level hormones and lower high-level hormones. In reality, the can do the opposite, depending on the person. Also, one thing people never take into account is that in order to raise low-level hormone, the adaptogen has to stimulate the gland. And, stimulating a sick gland is never a good idea. It can just cause the gland to fail faster.
rhodiola - another adaptogen
Alpha-lipoic Acid - can negatively impact conversion of T4 to T3
7-keto DHEA - in some people this can all convert to testosterone, leaving you covered in acne.
B12 and magnesium - but it doesn't say which types of B12 and magnesium
So, if something doesn't agree with you, you will have no idea what it is. It's so much better to take these things individually, starting them separately, so that if something doesn't agree with you, you'll know what it is.
Cytoquel is basically, just another multi, a collections of inflammation reducers. But, again, if something in the mixture doesn't agree with you, you won't know which it is. Far better to take these things individually.
HPA Control - is just more rhodiola and Ashwagandha, another adaptogen. Ashwagandha has been known to lower cortisol rather than raise it.
Are you sure he meant you to take ALL of these supplements, and not just chose one or two?
And, no mention of B vits (apart from the anonymous B12 in energy multiplex) vit C or salt, which are what the adrenals need most for 'support'?
I'm not surprised you're worried about the money aspect of his treatment. That last supplement alone costs a fortune. Does he have shares in these companies?
And, if it turns out that your low cortisol is due to pituitary malfunction, and the adrenals are perfectly healthy, all these supplements will be redundant. He really, really should be testing pituitary function first.
Hi greygoose yes im really worried now am I doing the right thing should I pull the plug on all this and try my luck with gp and nhs endos.im so confused.I’m really reluctant to be taking all this crap if I’m honest because I’m so sensitive I can’t even put a bit of cream on my face without suffering horrendous scald marks.
I should have researched the ingredients before I bought them your right but I had high hopes with this endo.im not taking anything now until I’ve had a chat with gp
I think I need to slow this all down now my alarm bells are ringing like mad which won’t help my stress levels.ty x
Well, I'm not saying he's wrong about everything.I just feel he's jumping the gun on a few things, and that it's essential to do the pituitary testing first so that you know what you're dealing with right from the start. I don't understand why he isn't doing that.
But, on the other hand, I doubt your GP will know anything about any of this - and might even be hostile to it. And, NHS endos know little to nothing about thyroid. So, I can't see you getting very far with them, either.
I had a brain scan done by nhs about 18 months ago because the eye doctor suspected I maybe had a fistula caused by the head injury,which I didn’t, would that brain scan have shown if any problem with the pituatory would you be able to answer this sorry to be a pain x
Well, it would if there was visible damage, or a tumour, but the damage might not be visible. And, a head injury is a known way of developing secondary hypo. So, the next logical step is the pituitary hormone testing: HGH and ATCH, etc. Have any of them been done?
OK, so that really should be the next step, and if he won't agree to that, then I have the feeling that he's just in it for the money, stretching it all out with irrelevances so that you have to consult him more often.
Now I’ve printed off his report I can see it much better and the more I read it the more I understand in combo with the advice I’m getting here.
It’s a three page report so he is being very thorough but I guess I’m just feeling a bit overwhelmed with it all my head is pounding this morning and eyes watering and so inflamed trying to keep reading that’s why I have to go have a break then resume.
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