Am I going mad??.

Hi Everyone,

I've come to this site as already have had good advice on here from another board regarding a different problem, and as thyroid/autoimmune illnesses are hard to get diagnosed I thought it better to ask people who have gone through it for hopefully a bit of guidance and also possibly assurance I'm not going mad and aren't a raging hypochondriac!!!

So, in 1994 I developed a lump in my neck, at the front. I was very early 20's at that point. I was told it was nothing and to go away as tests were all fine. A few years later lump grew, go told go away, nothing wrong all tests fine. Years later grew agin and after a lot of pestering by me they removed the lump as for years I'd suffered with the pressing throat sensation etc, but bloods always still fine, that was 2007. Since before then I have had so many under active thyroid symptoms which they will only treat me separate for but treatment has no effect as I think, well I know they aren't listening to me and will not consider thyroid or autoimmune disorders and when I mention them I'm treated like I'm a hypochondriac, and a lot of the time I'm told just to leave it it'll go away without any treatment. I have all of the below symptoms, and sorry to get so personal, but I am now nearly a recluse as my bowel problems are so bad I daren't go anywhere a part from work and local supermarket as I know where the toilets are. All tests come back negative or normal.

Another large goitre

Constant diarrhea

Weight gain (size 6 up to size 14)

Chronic fatigue

Unexplained pain

Heavy periods

Alopecia

Weak flaking nails

Always cold, sometimes to point hands and feet are painful

Blurred vision (eye test done, fine)

Constant mouth ulcers

Recurrent sinus infections

Tinnitus

I sound like a right wreck don't i!! That's cause I am!! I'm just sick and tired (literally

[Hidden]

Well, if you're going mad, so are most of us here too. xx Sounds like you've had - and are still having - a horrible time.

Do you have any blood test results to share with us? Unfortunately "normal" results are often far from optimal. We might be able to shed some light if that's the case.

[silverfox7]

Welcome to the forum! You sound like me on a bad day so hopefully you aren't mad but need some help. So yes blood results with ranges if you can. Ranges are important as labs differ. You will get loads of advice then I'm sure.

[lisabax]

If you don't have copies of your blood test results, please ask your doctor for a print out. They cannot refuse to do this as you are entitled to them, but you may have to pay a small fee for printing. You would need your TSH result, and ideally free T4 and free T3 if these are available. LB

[Hidden]

You are not mad and there is certainly something going on that our esteemed doctors are unable to pick up, think about, and treat.

By process of elimination, have you considered giving up gluten on all its form i.e. wheat, grains?

This could be at the base line of most problems. They trigger auto-immune reactions, damage the guts, inhibit absorption of vitamins and minerals and can upset the adrenals. Check Dr Williams Davis work/books, Wheat Belly 1 & 2, and on youtube. Dr David Perlmutter also wrote about the same topic "Grain Brain". All functional doctors recommend giving up gluten.

If you have not done so, yet, give it up as a trial for 4-6 weeks and see how it goes. You may be pleasantly surprised and see some very good improvements, at the very least on the diarrhoea issue. If you are up to it and want some real and fast improvement, you could eliminate sugar and dairy, too.

Top-up all your vitamins and minerals.

Finally, your thyroid tests. The usual drill (TSH, T4, T3 and anti-bodies). You'll get some advice by lots of veterans in here once you have those results.

Hang in there.. it may be the beginning of your road to recovery.

[Churchie]

I used to have diarrhoea two/three times a week and was shocked recently when I found out most people don't - I thought it was normal as had always been like that. I decided to trial gluten free after advice on here and take a probiotic first thing. I've not had any stomach issues for 4 weeks and amazed at the difference - it's not easy though and I really miss bread/pasta.

[NadeNud in reply to Churchie]

Hi

There's some really good gluten free bread and pasta that could give you back something of your old diet. Tesco's gluten free bread is very good in the UK and a lot of Schar products are also good replacements

[Castlepoint]

I used to have similar stomach & gut issues - it got so bad I was in daily stomach pain. I gave up gluten 8 months ago & have never looked back. Tests for celiac were negative but I just thought I would have nothing to lose, & I can honestly say that it gets easier with time. I do miss proper bread & cakes but I am a lot healthier! I do hope that you get the help you need, have you asked your GP can you see an endo? Hopefully you can get the help you need on here x

[sallypg]

I am hypo and suffered terrible diarhea a few months ago for about 2 months. The gut and digestion goes all wobbly when your thyroid goes pearshaped.

I suggest you have a few private tests, Free T3 being one of them as docs dont bother and its the test to show the staus of either hyper or hypo, and a saliva test for your adrenal glands.

[MariLiz]

Dear Woody,

This rang so many bells with me I had to reply. Like your GP, mine had continued to tell me nothing was wrong, although I felt awful.

Eventually I decided to see another GP privately, and paid for a "double" appointment ( half an hour consultation). This was available at a local private hospital. Not only did she really listen to me, but I got a referral to an endocrinologist and a colonoscopy. My endocrinologist ordered far more detailed blood tests, which proved my thyroid was failing to work properly, and showed the thyroid stimulating hormone to be at a very high level. If your own GP won't listen, you must find one who will! Good luck with it all. MariLiz

[Lionyx2006]

I was going to suggest vitamin deficiency tests, but someone beat me to that. I had low B12 for years and that causes similar symptoms to hypothyroidism.

You could have more than one condition at once too.

[greygoose]

Woody, when they removed your 'lump', what exactly was it they removed? Was it a cyst? A nodule? Part of the thyroid? And when you say they 'will only treat me separate for but treatment has no effect' what exactly are they treating, and how? Are they just treating the symptoms without looking for the root cause?

Your symptoms certainly sound like thyroid. But a bit more detail about what has actually happened - such as blood tests they've done and results - would help us enormously to help you.

One thing is certain, you are not crazy and you are not a hypochondriac. Hypochondria is one of those stock, false dianosis that doctors hand out to hide their ignorance and their laziness. I don't believe in hypochondria. I believe that if a person says they are not well, then they have a good reason for saying that. Just because doctors don't know about something, doesn't mean it doesn't exist! So, let's do their job for them and get to the bottom of this REAL illness.

Talk to you soon.

Hugs, Grey

[Polaris]

I'm so sorry you've had such a battle to get healthy. Would it be possible to change your doctor? It certainly sounds like you have all the symptoms of Hypothyroidism and others here have already given good advice on this. Some of your symptoms, particularly diarrhoea, could also be B12 deficiency or PA, which is very connected to malabsorption in the gut. Autoimmune Thyroid disease and B12 deficiency are linked both ways.

Persistent diarrhoea is a symptom of Pernicious Anaemia (57 per cent, of patients have it according to Martyn Hooper of the PA Society). You could ask to see a gastroenterologist, for the more reliable tests for PA or B12 def. (Intrinsic factor, MMA and homocysteine) to be carried out.

The following link has a lot of helpful information on B12 def, as well as an interactive symptom list:

b12d.net/content/B12-signs-...

[Hidden]

Thank you all for the fantastic advice and comments, they've really helped to assure me I'm not going mad, just made to feel like it by my GP. I've said to a few different GP's ( at current and old practice I went to) could it be auto immune illness and literally told certainly not! No one will join the dots so to speak, which I think if you look at the list above and look at certain illnesses it's obvious, but as I said if I say this I am told no and not to peruse that line of enquiry.

To give more info relating to the questions you've asked.

I don't have the figures for my blood results, just told normal by receptionist. Will ring on Monday and ask for the figures and will post.

The lump I had removed was part of the thyroid plus cyst/growth?. I know they tried to drain some fluid off it before surgery but couldn't as they said it was full of jelly/ solid substance.

Given loperamide for diareeha by specialist, but when I was at the gastro dept 3 of the specialist nurses all said not to take it as bowels become reliant and stop working properly, which is understandable. So only take it if I really need to and it takes 2 days, yup, 2days to take effect!, the advert for Imodium (brand name for loperamide) says works straight away!, no it doesn't.

Alopecia - no treatment given, told nothing they can do, but told to pay for the regaine product. It doesn't work so don't bother.

Weight gain - went to see nurse at GP practice re weight loss. Had made an honest list of what I eat, she told me I should be anorexic as I eat very little as have no appetite. When I saw gastro specialist she told me it was fine to eat just one meal a day in the evening. A small meal at that. She said that as as soon as I eat, or while I'm eating I have to go to the loo. ( sorry if too much info), doesn't matter what I eat. I find that coming from a specialist doctor quite disgusting!,

Have tried cutting out food groups for weeks to see if any difference and see if I feel better, I didn't. And no weight loss.

Just literally been for my nails doing as natural nails a disgrace, and I knew I shook, but after sitting there and taking notice, it's shocking to see just how much they do shake.

I'm going to make appointment at GP and ask to see specialist and won't take no for an answer. I'm sick of being told, no, there's nothing wrong with you!,

Thank you all again for your encouraging comments and helpful advice it really has helped. I'll post the blood results on Monday to see what they show

Thanks,

Woody