Trying and failing to get a Diagnosis.

[Irixz]

Hello Everyone,

I'm new to the forums, I've actually been reading posts and articles for about five months now, but i've come to a solid dead end in getting a diagnosis for Hypothyroidism and I didn't know where else to turn.

So a little History, i'm 28 years old, female and 17 stone 16lbs and 3/4. 2 years ago I had a terrible case of GallBladder disease. I was in hospital for a week and out 2 days for 6 months with severe jaundice. I stopped eating, because anything I ate would trigger an attack weather it was slavered in fat or lettuce leaves. I lost a lot of weight. After the surgery I had never felt so good in my life but It didn't last long.

Now while I don't have the best eating habits I don’t have a terrible diet. I don't consume sugar (I don't drink soda, fruit juice or tea) and at the time I had a takeaway once a week I don’t like chocolate but do like crisps. My food is homemade and cooked from scratch, no shortcuts no additives and certainly no ready meals.

I eat tons of fruit and veg at least three pieces of fruit a day and at least two kinds of vegetable with my dinner.

Despite this the weight piled on me. I'm currently 17 stone 16lbs and 3/4 stone and very obese.

Very tired, my hair is thinning (that i’m now wearing wigs), my skin is awful scaly and dry i get terrible boils and spots everywhere, but mostly on my neck, shoulders and breasts. I am always cold, even now with the lovely weather my heating is still on, mostly in my feet. I get cramps in my calves just by walking up the stairs. Six life is non existent and i’m feeling quite blue about everything. Even my hobbies cannot motivate me.

I put this down to work stress and that I needed to take better care of myself as I have previously haven't, putting work first 24-7

Over Christmas, both me and my partner decided to do the whole healthy eating thing. I bought lots of lotions and potions and vitamins to start taking more care of myself. It went very well, we were making lunches from dinner the previous night. We opted for an Asian diet, small portion of fish (tuna steak, prawns, sea bass, salmon or squid) (lean beef once a week) one small portion of rice or rice noodles and at least three kinds of veg per meal always steamed. My breakfast consisted of greek yogurt and some fruit, slim fast (If I was being lazy) or Scrambled/poached eggs with some tomatoes. Lots of water and green tea

I ran in the morning, with difficulty (due to weight and asthma) and during work took a walk in the local woods for an hour. I struggled everyday between 2-4 (and still do, but now i self medicating on pro-plus) I fought to stay awake at work, I come at at 6 make dinner, eat it and fall in bed at 8PM. As the weeks went by, my partner transformed before me , his clothes were falling off him. If anything mine were actually feeling tighter.

So we started weighing ourselves, my partner had lost two stone, while i was still 17 stone 16lbs and 3/4, two weeks later we did it again. Once again a solid 17 stone 16lbs and 3/4 and my partner had lost some more. My partner questioned if I was cheating, I explained I was not. My weight hadn't changed at all. I explained to him that it wasn't even changing by a pound. So the next day he weighed me in the morning and then when I returned home, despite it being the same day and the difference in time my weight was the same.

He frowned and said, well that's not normal...

Moving on; I complained to my mother about my lack of weight loss and how now i'm completely on slim fast and despite feeling worse, nothing is shifting not one pound. This is when she pointed out to me that it could be my thyroid. Three generations of women in my family all take thyroxine, they also have all lost their gallbladders too.

My mother helped me keep a symptom diary and pointed me to the Thyroid UK website.

After moving (June last year) I signed up to a new gp and made an appointment. I gave her the check list of all my symptoms, told her of my efforts to lose weight, Explained that my mother, grandmother and great grandmother all have underactive thyroids and all take thyroxine, can I please have a thyroid test, because I'm struggling to do my job with my constant brain fuzz and tiredness, excise is painful with the cramps and I look awful.

She rolled her eyes at me and just said "Get more sleep nothing is wrong with you."

At the shock at her dismissiveness I urged her to please do the test, something is not right I can feel it. She agreed, eventually, and also would test my b12. I let her know that I was taking a b complex supplement to take the edge off my symptoms, (which my mother suggested and it helped a little)

My results came back, TSH normal 3.5 and b12 optimal (sorry I don't know that number!)

No further action required.

So I went back to the doctor, asked for a different one this time as the women was awful. This time it was elderly gentleman who listened to me with care, looked at my list. he explained my TSH is normal. I asked him if he would test my t4 and t3. he told me that on the NHS he wouldn't as my TSH is normal, but as an alternative he would check my hormones, foliate, kidney function and liver function and diabetes.

So we did, and it all came back normal, apart from my liver which was "okay" by his standard by wouldn't digress further.

So on my third visit, I wanted to see that same elderly gentleman to push for more tests and now I had a new symptom to show them. My tongue, bloated and swollen was started to scallop quite badly it folded right over my teeth.

But the doctor I saw was a different doctor (The elderly gentleman's son actually, I found out later.) He listened to my terrible time and I showed him my tongue.

He looked over my notes and frowned "Your TSH is normal”! he said and I agreed "You've been tested for diabetes too.." and said yes, but three members of my family have underactive thyroids, can't I have my t3 and t4 tested? "Why haven't they tested you t4 already, Why hasn't anyone done this sooner?" he utters in disgust don't "worry we'll order this right away."

FINALLY! I thought and made my blood appointment 3 weeks later.

When it finally rolled about, I sat in the nurses chair, and explained my ordeal. she shook her head sadly and looked at the test as I asked her nicely to please check if the t4 and t3 are checked.

They weren't...

My heart sunk, but she said we will add them right here and she did, I watched her do it. This was Monday. She took my bloods in a single vial and said to call on Thursday for my results. I anxiously went through my week.

I called Thursday to speak to the Medical Secretary, she said "It's all normal, no action necessary." I kindly asked her for the numbers and she said TSH 1.2 between the range of 0.5 and 5.0 you're fine.

I was surprised by the sudden drop from 3.5 to 1.5, should they swing so wildly I asked her? She said she would arrange for a doctor to call me. I said “Okay, what about my t3 and t4?” She said, I can see no record of those tests on here. I responded that they should be there I saw the nurse order them in front of me to which the medical Secretary said "Sometimes it can take a while for the hospital to update all the findings, call back tomorrow.”

So I did, Today spoke to her again and explained that I was told to call back for tomorrow and get all my results. The t3 and t4 were not there.

I asked her they should be there, I saw them ordered, she said there were no notes of a t3 and t4 test, I asked her to double check. The notes were there but the hospital didn't test. She said she would call me back.

About five minutes past before she did. "Sorry, but the hospital didn't test for t3 or t4, they only do that test if you are on thyroxine, since you are not you just got the TSH."

I choked back tears as I explained to her how long this has taken, how it runs in my family, how god awful I feel I need those tests what am I supposed to do when the hospital is refusing the test?

She said she would get the doctor to call me on Thursday to plan a next step of action.

So here I am a bit defeated, still fat, Just woken up from a 3 hours nap after work and very upset.

I really don't know what to do next, my mother is all hell fire and brimstone, telling me to come back home (100 miles away) and see our family doctor, to write to my MP and all sorts.

I'm a bit out of fight and a little unsure of what else I can do.... thanks for reading me ramble

[SeasideSusie Remembering]

Oh, you poor thing. Welcome to the world of half educated (thyroid wise) and uncaring doctors 😥.

So, time, I think, to take things into your own hands. You are going to have to read, learn and, if necessary, take responsibility for your health yourself.

Firstly, I would get private tests for your thyroid. The Blue Horizon plus Ten is a good one at a reasonable price (£79) and you can do it at home if you wish with a finger prick test or get the blood drawn if you don't think you can manage that bluehorizonmedicals.co.uk/e... . For £20 more you could have the Thyroid Plus Eleven, the difference being that includes vitamin D test as well bluehorizonmedicals.co.uk/e... .

Both of those tests include the FT4 and FT3, the important ferritin and folate tests and B12. Also included are both the antibody tests which will indicate whether you have autoimmune thyroid disease (Hashimoto's).

Once you've had the test done, come back, make a new post and members will comment. If it points to hypothyroidism you could take the results to show your GP, he won't like it but he might be prompted to do NHS tests which might get the ball rolling. Or, you could make the decision to self medicate like a lot of members here with perhaps Natural Dessicated Thyroid. But get the tests done first to see if you do have a thyroid problem.

Also, the vitamin and mineral tests will be useful to let you know if you are taking the right supplements and point to any others you might need. All Vits and mins need to be optimal.

Don't worry about your weight for now, let's see if you have thyroid disease. You won't be very successful losing weight if you are hypothyroid and untreated. One step at a time.

So, don't let your doctors mess you around any more, you've had enough. Time to take things onto your own hands and help yourself, they've already proved they're not going to help you.

Well done on coming here, you've taken the first step. Get tested privately, come back and let members here help you 😊.

[shaws Administrator]

I am sorry you've had such a struggle which seems to be the norm in the UK. Doctors have lost their skill in diagnosing by clinical symptoms which seems you appear to have.

Unexplained weight gain is one of the commonest symptoms and as there are 300+ you'd think they'd know the more common ones.

We have to read and learn and take things into our own hands. You will get better and particularly as it runs in your family it is more than possible.

If you can get a blood test from one of our recommended labs (one does finger prick and are reliable labs). They can also be postal.

When overweight through hypothyroidism when you are finally on an optimum of hormones weight can reduce. Sometimes there's no need to diet but sometimes diet is necessary.

Many think the 'weight' is fat - but if hypo it's not. It was one of the major symptoms before blood tests were invented.

healthunlocked.com/thyroidu....

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

The blood test should be taken at the earliest possible and don't eat before it although you can drink water. Water should also be taken the day before so it's easier to draw blood. Antibodies would confirm whether or not you have an Autoimmune Thyroid Disease called Hashimotos. If diagnosed and taking levo allow 24 hours between the last dose and test and take it afterwards.

Always get a print-out with the ranges for your own records and you can post if you have a query.

i.e. exercising when undiagnosed reduces T3 which is the Active Hormone every receptor cell needs for us to function. You have to reach an optimum of hormones first before you think of dieting.

[PeaPod3]

It may also be useful to get your lipids done - this used to be used as a diagnostic test for hypothyroidism before the TSH test was developed... If someone is hypothyroid they tend to have a high chloresterol.., again you need to read more about this if you are going to take charge of your own care. Another thing to consider if you are very tired is checking your adrenal function - saliva test from Red Apple Clinic -a bout £90-100. Again , educating yourself is vital. I recommend for starters, Stop the Thyroid Madness - Bowthorpe and Adrenal Fatigue - J. Wilson.

Good Luck!

[humanbean in reply to PeaPod3]

I'd be wary of getting cholesterol checked. If any of the levels come back "high" then the doctor will push statins, not thyroid treatment. Statins don't do anything for women at all. If Irixz refused the statins then she might be noted as non-compliant, which could make things worse.

There have been a few people on the forum who've mentioned to doctors that cholesterol goes up in hypothyroidism, and that it used to be diagnostic for the disease. The response has often been "Hypothyroidism and cholesterol have nothing to do with each other." Sadly, doctors have allowed lots of knowledge to dwindle away and vanish.

[Jazzw]

See if you can get hold of that B12 result. If it really was optimal I'll eat my hat.

I'd also be surprised if your Vit D wasn't on the floor.

As Susie says, a private blood test would be a good idea - and it looks like it would be the best way of getting an answer quickly. If you ordered one over the weekend it could be posted out on Monday, would be with you on Tuesday and you could do the test and post it back straightaway on Wednesday. With luck you'd have some answers by next Friday.

[Irixz]

Thank you everyone for the warm welcome and sympathy. I'm not usually one to be on the 'boo-hoo' train, but with today's result I'm feeling pretty down and out.

I'll spend the weekend looking through the information you have provided me.

Today over dinner, my partner and I discussed private testing, we decided that it would be okay to put it on the credit card, so I'll order that right away and keep you informed! I'll have to wait for Monday to get a print out of my results. I also would like to know the finer details of all the tests I've had. I've written them down somewhere, but for the life of me can't remember a) what note book I wrote them in and b) where that notebook is.

Once again, thank you from the bottom of my heart. I'll do my reading this weekend. <3

[greygoose]

Hi Irixz, welcome to the forum - sorry you need to be here!

TSH does very a lot. It is a very, very unreliable test. It's at it's highest early morning - so always try to get your tests done early - at least before 9.0 am. It lowers if you've eaten - so always a fasting test (no matter what doctors say!), just drink water. It can be affected by a lot of other things, too.

It will also vary if you have Hashimoto's Thyroiditis - or autoimmune thyroiditis, same thing - so you really need to get your antibodies tested : TPOab and TgAB.

Your original TSH was hypo, actually, although doctors would never admit it. A truly 'normal' TSH is around 1.0. At 2.0, the gland is struggling. At 3.0, you are hypo. But, the ranges in the UK are rediculous. It is also rediculous that they won't do the FT4 if the TSH is 'in-range', because there's such a thing as secondary hypo in which the TSH never goes over-range because it is a pituitary problem, not a thyroid problem. TSH is a pituitary hormone. And they very rarely do the FT3. The odds are stacked against people because of an unreliable blood test. It's criminal, really.