New on Here and Need advice please!!!

[JoyceA]

Hi everyone,

This is my first post but I've been on the site since February this year (didn't have the courage to participate in anything) :-). Please bear with me if my post is a little long :-(.

Twelve years ago I had severe head injury where I was unconscious for almost two weeks & woke up with complete amnesia for about three months. Anyway, I slowly got my life back but towards the end of last year started having hypo symptoms. My first GP concluded I was imagining things and my second GP (in March) said it was fibro. I had stumbled unto thyroid UK by this point so I insisted it was thyroid related. He wasn't happy and dismissed me saying he knew what he was talking about. I'd done loads of tests privately but the always seemed to be with range even though I felt awful.

I went to see Dr P in April. He said I had adrenal insufficiency and hypothyroidism as a result of poor pituitary performance due to the head injury. I was advised by someone else that I needed a synacthen test just to check my pituitary function as well and that can only be done at hospital.

I registered with a new GP (the third in 6 months) and I was hopeful he would help. I saw him on Tuesday 11th June and he was no help. He dismissed any link with my brain injury and the pituitary. Said nothing like that exists. He said my thyroid results were normal (TSH 2.21, range 0.5-4.0, FT4 15, range 10-22) and there was absolutely nothing wrong with my pituitary. He said he is a senior registrar in internal medicine and knows that there's no link between brain injury and pituitary disease and he is far too experienced to give me a diagnosis just because I said so. In fact he said, most of the symptoms I said I had were probably not really there because my heart was fine...etc etc. He said I had fibromyalgia and he would refer me to a psychologist if I wished and I declined.

Anyway, prior to seeing him I had started on the nutri adrenal extra tablets and all the supplements (Vit C, floradix, Co Q10) Dr P asked me to take. I hadn't yet started on the nutri thyroid as I had to take the nutri adrenals for 10 days. I started nutri thyroid tabs on Tuesday & I feel a slight difference already. The brain fog seems to have cleared. My mood seems better. The constipation stopped and my movement is still slow but not as slow. I still have aches and pains in my muscle and joints and tire really easily. But to me this confirms that I definitely had a thyroid issue. I know nutri thyroid doesn't have a high dose of thyroid hormones and I believe if I started on armour or something similar I'd feel even better.

My worry is self medicating on thyroid hormones won't fix my pituitary (or will it?). I can't do the synacthen test due to my GP's "arrogance" in believing he knows it all. Should I even be worrying about my pituitary? Also, I believe being hypothyroid is something I have to live with for life. Not having this diagnosis on my NHS notes worries me as well. I'm 34 and I plan on having children someday. The doctors will have to be aware of this to manage the pregnancy won't they? I'm quite happy to self medicate as my GPs have been unhelpful so far. I'm just worried about the practicalities I suppose. Please can anyone advice me where to go fro here or am I worrying over nothing? I've changed GPs three times already and seem to be going from bad to worse. I'd appreciate any advice...

Thanks.

[Hennerton]

Yours is quite a complicated history and I feel reluctant to offer advice but am sure that your best move would be to find a private doctor who can and will prescribe NDT and who looks at symptoms and not blood tests. Easier said than done and I doubt you want to pay for pituitary testing. I am not even sure how they test it and I thought the synacthen test was for adrenals. I hope someone else will come along with that info. I know that when I saw an equally arrogant professor of endocrinology last year, he was very keen to prove that my pituitary was working well and did no test but simply asked questions about my menstruation history. When I told him I had had regular periods until I had a hysterectomy at age 49, he seemed satisfied and from that deduced that the TSH blood test could be relied upon to be accurate in terms of my thyroid function. This seems to be all he wanted to prove. He was totally obsessed with this test!

If your periods are fine, then I expect your pituitary is too, although that may be all too simplistic.

To be honest. I am not sure it matters much. You feel unwell and your thyroid is probably not working well. A free T3 test might be useful, as that will show whether you are getting enough of the hormone you really need. It is converted by your body from the T4 released by your thyroid. The test could be done by your GP if he will help you, or privately via a company like Blue Horizon. Thyroid UK website has details. TUK also has a list of doctors who will prescribe NDT. I know of one and can send you a private message if you wish, depending upon your area. No good if you are in the North as all branches of the practice are in the South.

I hope you get help soon and start to feel much better. x

[HarryE]

Hello! I self medicated as I was refused treatment by GPs and an NHS endo. I have since been to see a private endo and she has supported my actions and written to my GP for me. So I am inclined to agree with hennerton, that might be a solution.

[HarryE]

And yes, the synacthen test is for adrenals. I'm not sure if you can treat your pituitary really, I was under the impression that if your body needs the thyroid hormones then you treat that, even though if your pituitary was working properly your thyroid would be able to do it, but I am very probably wrong! Someone posted an article about hypopituarism recently, I think it was Lyn Mynott, there was something in one of the papers about it.

[nightingale-56 in reply to HarryE]

Hi Harry, Hypopituitarism used to be treated with Human Growth Hormone but this (since about 1995) is now treated with the synthetic form (forgotten the name). My son was treated with injections of this from the age of 2.5 years. Would love to read the article from Lyn Mynott if anyone has a link. Janet.

[HarryE in reply to nightingale-56]

Here it is!

healthunlocked.com/thyroidu...

[nightingale-56 in reply to HarryE]

Thank you for this link Harry. Janet.

[JoyceA]

Thanks for your response Hennerton. My periods turned quite heavy and painful last year but funnily enough when my symptoms worsened this year the periods became very light. Now I get a period for one or two days only with and very light indeed.

I did a lot of blood tests with Genova and Blue Horizon before seeing Dr P. Even my Ft3 was within range. He said with my adrenals not functioning properly so the FT3 wasn't being taken up into my body cells as they should so my blood results looked normal. The TSH was in the range because my pituitary isn't functioning normally and not producing more TSH as would be expected in hypothyroidism.

Thanks again for responding and I'm hopeful I'll get some more help through all you lovely people on here.

[jimh111]

Head injury can damage the pituitary, in particular whiplash is associated with 'secondary hypothyroidism', hypothyroidism due to a weak pituitary. Head injury can also affect the pituitary stimulation of the adrenals. Your GP is wrong on this point. However, your TSH and fT4 show your pituitary is putting out the expected level of TSH so I doubt you have a pituitary disorder that produces too little TSH. You seem to be responding to thyroid hormone but this might be short term. You have fibromyalgia and this is associated with low growth hormone (GH) levels. Most GH is produced during deep sleep, so it's possible that your pain leads to loss of sleep which leads to fibromyalgia which leads to loss of sleep.................

I'd see if you could get expert advice on pain management for the fibromyalgia (presumably your GP wouldn't object to that) and then see if you can find a helpful thyroid specialist.

[nightingale-56 in reply to jimh111]

Good explanation Jim, my son's TSH is always low, and unfortunately so is his T3 with T4 being near the top. Needless to say Endo will not give T3. Wish I had kept him under UCL instead of coming local for treatment. Janet.

[Clutter]

Hi Joyce and welcome to the forum.

Your new GP's arrogance is only outweighed by his ignorance. "Following traumatic brain injury or subarachnoid haemorrhage, there is a high risk of hypopituitarism but symptoms are usually masked by the sequelae of brain injury. Endocrine assessment should be routinely performed, especially following moderate or severe head injury." patient.co.uk/doctor/hypopi...

I would return to the arrogant GP and present him with the link and ask for referral to an endocrinologist. If he refuses ask for the referral request to be noted on your records and see another GP at the practice or change GP surgery again. You may well be experiencing hypothyroid symptoms but it will never be picked up by TSH. FT4 and FT3 are the only suitable thryoid function tests for secondary hypothyroidism/hypopituitarism. An endocrinologist will also giive you advice on pregnancy planning and management of pregnancy.

patient.co.uk/doctor/pituit...

dailymail.co.uk/health/arti...

[JoyceA]

Thanks everyone. Jimh111, thanks for your advice as well. I forgot to say I don't have loss of sleep. My second GP also assumed I couldn't sleep and wanted to prescribe me an anti depressant to help with my sleep pattern. I sleep through the night and can sleep all day if given the chance. I've also gained a lot of weight since January. My hair is falling off so much I've taken to wearing wigs. I'm glad you think there's nothing wrong with my pituitary. I hope that's indeed the case.

[nightingale-56 in reply to JoyceA]

Hi Joyce, My son also sleeps most of the day and is up most of the night. He is about 3 st overweight, but has quite a good head of hair. Please make sure you get your thyroid sorted before you get pregnant, so as to eliminate such problems as I have had with my son. Wish you well. Janet.

[JoyceA in reply to nightingale-56]

Thanks Janet :-)!! I don't know how I'm able to but I can sleep 24hrs even given the chance. I sleep all night but wake up not feeling refreshed so I just want to carry on sleeping during the day. I'm glad for people like you online. I'll keep working to get my thyroid sorted before having any children. That's not on the cards for now but I'll bear your advice in mind...x

[jimh111 in reply to JoyceA]

Trauma or stress can lead to 'non-thyroidal illness' (used to be called 'euthyroid sick syndrome'). This is where the hypothalamus (which produces TRH to stimulate the pituitary to produce TSH) can underperform. This can lead to lower TSH, or TSH that is less bioactive and consequently the blood tests look normal but the hormone levels are lower than they usually would be for the patient. In this respect you may have insufficient pituitary output (although the pituitary is healthy). In this case the solution would be to take e.g. levothyroxine and adopt whatever strategies to resolve other symptoms such as pain. It may be in time you could reduce / come off the levothyroxine.

[JoyceA in reply to jimh111]

Thanks Jim. That's really encouraging for me to hear.

[JoyceA]

Clutter, you're amazing :-)!! Thank you so much. I may have to change practice again as my new surgery is quite small and only run by the one GP that knows it all(apparently). Thank you so much...I'll take due note of your advice.

[Clutter in reply to JoyceA]

Joyce, if you have the energy and inclination it is worth going back to Dr. Knowitall and requesting a referral. At the very least he can educate himself on secondary hypothyroidism and not be so dismissive of patients in future.

If you don't get a referral or hypothyroid diagnosis soon I wouldn't hang around waiting for your symptoms to deteriorate, I'd self medicate. I'm not sure pituitary injury can be undone other than by taking thyroid replacement to address any shortfall caused by the pituitary dysfunction.

Fibro symptoms are very common in undiagnosed and under medicated hypothyroidism as is unrefreshed sleep and hair loss.

You also need to have your ferritin, vitamin D, B12 and folate checked as ferritin of 70-90, and the others high in range are required for optimal absorption of thyroid meds and to feel well.

[JoyceA in reply to Clutter]

Thanks Clutter :-)!! The only way I can see him again is if I had someone to to go with me. The consultant(neuropsychologist) I saw after I had the head injury is the chairman of Headway which is like the Thyroid UK for brain injury patients. I hadn't seen him in a while but I told my GP that I'd rung him and asked if my symptoms might be linked to the injury and he'd suggested that I ask my GP to look into pituitary damage (i.e. referral to endo). My GP didn't take kindly to that at all. That was when he came out with the "I'm a senior registrar in internal medicine"etc. Granted the neuropsychologist didn't actually say that but I thought my GP would be more likely to act if he heard that. That actually made him angry so i stayed quiet after that and let him say all what he had to say. I think I'll just self medicate. I don't think he'll refer me to an endo in this lifetime :-).

I'll also take Hennerton & Harry's advice and save up to see and endo privately and hopefully if they write a letter Dr Knowitall (or a new doctor) that will be more effective.

My. Vit D was quite low (19.9) earlier this year but I've been supplementing since and last I checked it was 78. My B12 was quite high (can't remember the exact figure) as I've been taking H&B hair, nails & skin supplement and these contain a lot of Vit B12. My ferritin was 45 last month. I've been taking floradix for a couple of weeks now but not sure if that is the best supplement required.

[Hennerton in reply to JoyceA]

I always have low iron, as I do not eat red meat and I take liquid Spatone daily, which is well absorbed but remember to keep it four hours away from thyroid meds. I think there is more iron in it than Floradix. Of course your GP could be prescribing but maybe you cannot be bothered with him again. So pleased Clutter has shown how wrong he is! You have had some great advice, so I hope all goes well for the future.

[rosetrees]

Joyce. You're in good hands with Dr P. I take nutri thyroid/thyroxine and the NT has been great for me. PM me if you'd like details of a private doc who does prescribe NDT.

[Mabes]

I believe your 'knowitall' is wrong... When I was having growth issues I did a lot of research and I remember reading about TBI and hypo pituitary issues. I was concussed 3 times as a child so I found this interesting.

Anyway even a quick search on Google shows up lots of studies into this area:

scholar.google.co.uk/schola...

[JoyceA]

Thanks everyone. I'll PM you rosetrees and will get spatone as Hennerton advised. Thanks for the link Mabes....