Newbie can't get treatment on NHS looking for l... - Thyroid UK

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Newbie can't get treatment on NHS looking for legitimate Thiroid source

epona66
epona66

Hi everyone I've just joined as I'm desperately trying to source some NDT, possibly thiroid from Thailand and an not sure which sources are real and which might be dodgy.

I've been sick for almost 25 years and was diagnosed with M.E. my TSH was tested several times over and I was always just told it was normal. I also gained 5 stone in weight the first year I was sick and have been steadily gaining since.

The last 3 years I've been much worse and I've been trying to get answers. Still nothing on the NHS, I was so sick this winter I didn't think I would see another summer. A family member source some T3 and T4 for me to try and I tried a half dose as a precaution for a few days before moving to the full dose. It was like someone flipped a switch in my body, it got me up on my feet and actually able to leave the house, my face completely changed and I was almost able to recognise the person in the mirror without the grossly swollen eyes and cheeks and even the deep bone pain lessened. Near the end of the box I weaned myself back off them, soon as I was on the lower dose the improvements dackered off but I've thankfully been mostly back on my feet since providing I don't do too much but the pain, brain fog and swelling is all back to stage 1.

I went to see my GP and told her about the experiment, she told me off but sent me for tests. Before seeing her to discuss the results I requested a printout of the test results.

My TSH was 6 but all other thyroid tests were in normal range. D status, folate and several other things were very low. Several of the liver enzyme tests were way off (non drinker). The GP was only concerned about the vitamin d and advised me to supplement arch I have been doing for years anyway. She said my TSH wasn't anything to worry about and that I wouldn't be referred to an endo or get any treatment until it rose to 10. She just wants repeat tests every month which is hard for me as there are not enough parking spots near to the hospital.

I really want to try NDT whilst carefully documenting the results and read up about thiroid, I am just worried about getting a legitimate source and also about getting ripped off. Can anyone please help? Thank you, Angela

16 Replies
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SeasideSusie
SeasideSusieAdministrator

epona66

Why isn't your GP looking at Subclinical Hypothyroidism which is where the TSH is between 4 and 10, FT4 is normal, along with symptoms - see

cks.nice.org.uk/hypothyroid...

Scenario: Subclinical hypothyroidism (non-pregnant)

Many people with SCH do not need treatment, but if a decision is made to treat, prescribe levothyroxine (LT4).

If TSH is between 4 and 10 mU/L and FT4 is within the normal range

◾In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.

◾In older people (especially those aged over 80 years), follow a 'watch and wait' strategy, generally avoiding hormonal treatment. If a decision is made to treat, prescribe LT4 and recheck TSH two months after starting and adjust the dose accordingly.

◾In asymptomatic people, observe and repeat thyroid function tests (TFTs) in 6 months.

I would see another doctor, quote the NICE Clinical Knowledge Summary as above, and ask for a trial of Levo.

If you go straight to the NDT route, you are very likely going to have to do your own thyroid function tests in the future, it will likely be blamed for anything you go to see your GP about, (your surgery may not be prepared to keep you on) and from what I understand paying for it is not straightforward as credit cards and paypal can't be used.

Thank you for the in depth reply. The doctor seemed to think that the raised TSH is because of my having taken the T4/T3 which I finished 6 weeks before this blood test. Looking back on older printouts I have my TSH has been around 3.9 for a few years now but I have never felt as sick as I have done the last 3 years and now my hair is drastically falling out. I'm a 51 year old woman and lost my looks, figure and confidence to this illness, my waist length hair was the only thing left about myself I still liked.

I did lose a lot of hair volume (about half) 15-20 years ago but after being sent to the hospital they took about 5 minutes to tell me that it was a rare type of alopecia and to just be grateful that the loss was even and not patchy. I am not carping about the hair for pure vanity though, I just think it must be a symptom of some underlying issues which might be a clue to what is wrong with me.

SlowDragon
SlowDragonAdministrator

You need to get vitamin D, folate, ferritin and B12 optimal too

Vitamin D around 100nmol

B12 over 500, and higher in range may be better

Folate also high in range

Ferritin at least half way in range

epona66
epona66
in reply to SlowDragon

Thank you too for your reply. I can't find where I put my test results at the moment (grr to brain fog) but I am currently taking 3x100ug of vitamin d3 capsules with K2 mk7 daily.

My b12 was in middle of the NHS range yet I feel better when taking it so I am back on 1000mg sublingual methylcobalamin a day along with folic acid ( I will be replacing that with a good folate soon). ALso taking magnesium as I feel much better overall when taking it, again despite being midrange in tests.

I can't remember what my ferritin was but I was surprised that my iron levels were in the mid range too as I have been anemic on and off all of my adult life but perhaps that is a result of a hysterectomy a few years ago.

I forgot to add that serum phosphate levels were also very high and I have no idea what that could be from.

Other symptoms besides the crippling fatigue and brain fog/memory issues are:

inability to lose weight unless on a very strict low carb diet and even then it is horribly slow and goes back on almost instantly when I eat any carbs.

muscles that feel brittle, almost like the fibres have crystalised and it feels like it shatters the fibres when I move after being still for a few hours.

deep burning bone/muscle pain, this has got much worse in the last year or so and has me in tears at times.

insomnia despite being exhausted all the time, I've hardly slept in 3 years.

Itchy skin, worse at bed time, doesn't respond to antihistamines

rashes that come up rapidly and fade just as fast for no seeming reason

constant thirst, (not diabetic) mouth, throat, sinuses and eyes always dry. Drink at least 4 litres water a day.

constant throat infections for over 25 years, tonsils are permanently enlarged

lymph nodes in neck swell and ache when over done things and mostly go back down when rested

Since before Christmas right side of neck and throat is always tender and swells more than left, this goes from base of ear to collarbone.

Last 2/3 years swallowing problems, food gets trapped in my throat and in my esophagus, a year ago I had to have an IV muscle relaxant to allow a large mass to go down.

Choking on saliva whilst awake and asleep.

Last few years 2/3 chest infections per year

non celiac gluten intolerance

Since Christmas time, air hunger when moving, bening to pick things up, lifting things etc.

Swollen/puffy eyes and face all the time, also look waxy according to family members.

Sorry for this being so long.

Thank you,

Angela

Espeegee
Espeegee
in reply to epona66

I’m in tears for you after reading that, I wish I could come round and give you a big hug! To be honest, if I were you I would write everything down that you have here and send it in a letter to your GP and then make an appointment to discuss it. If she isn’t moved by your obvious distress then I’d try to find another practice.

epona66
epona66
in reply to Espeegee

Thank you I appreciate that, over these years I'm more used to people thinking I'm just swinging the lead or simply neurotic. Every GP at my practice bar this one has been suggesting it is all down to stress, depression or anxiety and that there is nothing else wrong with me. I get so angry at this as all I want is to be able to get on with my life! My family collectively own horses and they all ride, it has been my lifetime obsession and I am desperate to get back in the saddle and just have fun and to be able to help teach my granddaughter.

Almost a decade ago I went through a very distressing period in my life due to the actions of somebody else. I had a very difficult time with it and went through counseling. The (very helpful) counsellor was also training as a psychologist and she was disgusted at the way my doctors have treated me over the years, saying that although I was in obvious emotional distress at the time with very good reason that I was one of the least depressed people that she had ever come across and that the antidepressants that the gp had been trying to get me to take would have been totally inappropriate for my case. I do get extremely angry and frustrated with life and not being able to do the things I want to do though.

I have started writing down lists of my symptoms as above many times in the past for my doctors but always end up binning them as they read like a hypochondriacs shopping list, when I was first sick in the mid 90's after a severe bout of something that mimicked glandular fever but tested negative, followed up by a mild concussion a few weeks later (horse handling accident) and then a week in hospital on a drip with a kidney infection after a tubal tie operation (all between March and July) they sent me to see a psychiatrist who decided I had agoraphobia as when asked how it was effecting me I replied that I didn't like going out on my own anymore until I was better as I had several episodes where I had collapsed and was conscious but unresponsive in public, one of them outside my son's school with my daughter in her pushchair, people had just tutted and walked by assuming I was drunk at the time. I was so ashamed and humiliated. I was not in any way agoraphobic though! The gp then also wanted to put me on antidepressants which I tried for 3 months before realising how much worse they were making me, I was like a zombie and even more fatigued than before.

Sorry for the essay but I thought it explained in some way how hesitant I am with doctors and that I have the definite feeling all the time that I am being brushed off and taken as just a hypochondriac. I could have died in 99 when I had what I was very, very sick with a bad cough and couldn't breathe properly. I refused to go to the doctors as my treatment by them was still raw. My mother popped in and rang for an ambulance on seeing me. Turned out I had blood clots on my lungs and probably would have died without treatment.

SlowDragon
SlowDragonAdministrator
in reply to epona66

You need to check vitamin D results. Some of us need higher dose of vitamin D, especially with gut issues and gluten intolerance

See a different doctor if your own won't continue Levothyroxine

Thyroid UK has list of recommended thyroid specialists

please email Dionne at

tukadmin@thyroiduk.org

epona66
epona66
in reply to SlowDragon

Thank you for your reply. I can't remember where I put my results right now but I know my vitamin d was very low. I couldn't understand why as I had been supplementing with 20000iu at least 2-3 times a week up until last autumn time when my supply ran out and then I was taking a high strength cod liver oil with added vitamin d up until March time, my blood test was in June.

I'm going to email Dionne now thank you although I'm not sure how I can get to see a specialist without being sent by a gp? I can't afford private with only my hubby in full time work. I am though going to look for another gp.

SlowDragon
SlowDragonAdministrator
in reply to epona66

Suggest you try Vitamin D mouth spray. It avoids poor gut function

Aiming to improve to around 100nmol. Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 3000iu for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

epona66
epona66
in reply to SlowDragon

Thank you, I had seen the d3 sprays but wasn't sure how well they would be absorbed, I'll switch to that soon as my current stock has run out and give it a try.

I am also taking K2 mk7 2x 75 ug and magnesium biglycinate 500mg, I previously always used a powdered magnesium citrate which helped a lot with muscle issues but am trailing the biglyinate.

Hello

Your age and your symptom list would suggest menopause or perimenopause is playing a big part in this now as well. It's easy to think it's all one thing. Here is an edited list of your symptoms that are classic menopause symptoms:

Crippling fatigue and brain fog/memory issues.

Bone/muscle pain.

Insomnia despite being exhausted all the time, I've hardly slept in 3 years. (This is a massive menopausal problem.)

Itchy skin, worse at bed time, doesn't respond to antihistamines. (I had this and it drove me mad. Caused by low oestrogen.)

Rashes that come up rapidly and fade just as fast for no seeming reason

Since before Christmas right side of neck and throat is always tender and swells more than left, this goes from base of ear to collarbone.

Non celiac gluten intolerance (low oestrogen reduces stomach acid)

To me it looks like you need to seek help in this area as well. Rather than just going to the GP (who sounds hopeless) I'd read up and lear all you can first. The Menopause Matters web site is a good source and has a very helpful Forum on it to ask questions of other members. The web site for Menopause Doctor is also very good. She's in the process of opening a new clinic in the Midlands. Lots of videos on there and written information.

You may, like me, need to tackle this energy problem from two prongs. Thyroid and menopause.

Good luck.

So sorry you are having to go through this. Is there another doctor at the surgery you can talk to? If I read that list in her position I would be apologising and wanting to start you on medication! So you need to see an alternative who is more sympathetic. If you look on the Thyroid UK site who run this forum you will find a list of possible symptoms. Print it off and annotate so all your symptoms are noted. You may find ones that at the moment you don't think of that being down to your thyroid and even if you have to stick with the unhelpful one she may have to rethink especially as this forum Heath Unlock and adminsistered by Thyroid UK is listed on NHS Choices as the site to look for help with malfunctioning of the thyroid gland which you have aswill have ticked several things on your symptoms list. Alright you took things into your own hands which is frowned upon by the medics but it showed you had good reason from your symptoms and that your body responded favourably so you should be given a properly conducted trial of at least 3 months. The lab suggested the data could be inaccurate if taking biotin. Is there any reason you may have been and so should have a retest anyway? Biotin can be found in a vitamins B complex and I understand it can also be found in hair and nail products. It doesn't mean you can't be tested but Biotin should be stopped for 5 days before hand. I also suspect your doctor didn't give you time to speak about all your symptoms so which ever doctor you see for your next appointment write a letter and ask it be attached to your file and again list all you symptoms and what has been helping you. Doctors generally don't like doing this but one in letter form etc they have to attach it to your notes so again something else that should help you yo at least get a trial.

Good look and let us know how round two goes. Also if when you read the Thyroid Uk you find anything relevant to you then present your doctor with that as well.

epona66
epona66
in reply to silverfox7

Hi Silverfox7 and thank you for your reply. I was initially excited (wrong word lol) at seeing this doctor as she was new and initially did listen but once the test results came back the way they did I felt like she stopped listening. She also kept telling me that she didn't have the time to discuss everything as she had other patients to see. All she did say was that she wanted my bloods repeated monthly for a few months. I think your suggestion of asking for a letter to be attached to my notes though is excellent and I will probably do that for my next visit after I finally manage to get these bloods taken (not enough parking near enough at my hospital so keep having to go back home without them done)

That is really interesting about biotin I hadn't even registered it when reading the test results! I have been taking a high strength b complex for years as it seems to help. I just worked it out that I am taking 0.6 mg biotin daily in my b complex. I do cycle on and off it though and can't remember if I took it the day before my test.

Something I forgot to say! When taking anything with T3 in like NDT younentioned then it a bit more complicated and I wouldn't advise it for starting out. Results are read differently on anything including T3 and the only accurate reading then is FT3 which should be high in the range l but never over. So then you have not reliable FT4 reading as that can fall in its range so you will have no idea as to whether you are converting well and I think it's important to make sure that is happening. You may also find with careful monitoring if you can get that right that you may not need to go down the NDT route either.

With your symptoms you could ask to be assessed for sjogrens (pronounces “show-grins”). It is another autoimmune disorder which might fit with your description of your parotid glands swelling rather than it just being thyroid.

Still follow up on the thyroid tests as this is important too.

The itching could be low iron and ferritin levels, which is usual in under active thyroid.

Your story is similar to mine. I self referred to two endos on the Thyroid Uk list. But a word of warning, one on the list still refused to start me on levo. He is a diabetic specialist and wanted to start me on HRT instead. I would suggest that you still research them before self referring.

I also have air hunger. The only thing my GP did was refer me to a chest clinic, who have found a problem with my gas exchange. I'm now waiting on a lung and chest scan. Would your GP consider referring you? Once something physical has been found, maybe they will take you more seriously if they still refuse to budge when you show them the NICE guidelines.

Good luck with everything.

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