Advice needed please

[Dancingdaisy128]

Hi All

I am a long time reader but have only just joined...you're an informative bunch

But I am still so confused and I have an appointment with my GP at the end of the month so I want to be armed and dangerous, so I thought I would post my long (and possibly) boring story (With probably far too much information) and see what you all think. Am I being a hypochondriac?

In 1999 I had a partial thyroidectomy due to 3 very large nodules, my Endo told me I would need thyroxine for the rest of my life. Then I moved areas and my new GP refused to prescribe it as he said I didn't need it, my thyroid was working perfectly well.

I pootled along fine for about 10 years (TSH always about 2.6) until just after my 39th birthday and then my periods just stopped, i saw my GP who said it was an early menopause. Now we cut to 10 years later...

I'm still having an early menopause as I have the odd period (got to laugh).

In the last 10 years I have been diagnosed with IBS, Tendonitis, dairy sensitivity, gluten sensitivity, nodules in my joints (which I have had 2 operations to remove), depression, anxiety, possible sleep apnea, obesity, on the border of type 2 diabetes...oh it goes on and on...and no one will listen to me when I say it is my thyroid.

Everything was blamed on my high stress career, so i changed my career, took a massive pay cut and work a lot less hours, in fact I work from home twice a week, have a cushy job and really enjoy it, but apparently it is still stressful and I should take my anti depressants and my HRT like a good girl and stop annoying the lovely Dr and no I cannot have a referral to an Endo. There is nothing wrong with my thyroid. My last lab results were;

July '17

TSH 1.6 Middle range in the box

T4 11.4 Range 7.9 - 20.0

T3 4.8 Middle range in the box

February '16

TSH Middle range (She didn't have numbers)

T4 13.5

T3 Middle range

So apart from my T4 dropping there is little change.

So being the rebel that I am I found the email for the endo at my local hospital and emailed him directly...he wasn't happy and said my levels are fine and go away...in so many words.

My symptoms are;

Fatigue, waking up every 2 hours throughout the night, gritty eyes, my limbs feel like lead weights, headaches, brain fog, a new goitre which comes and goes (I know that sounds mad), scarce periods, cysts, skin tags, fluctuating blood pressure, I cannot lose weight, (despite following slimming world religiously for over 6 months now), I'm either boiling hot or freezing cold, brittle nails, losing hair, aching joints...

I get good days and bad days, but mostly bad where I just can't do anything except lie on my sofa...but apparently that's depression!

I know my own body and mind. I am not depressed, I am not menopausal, well I might be now, but you get my drift so I am not taking the flipping tablets the Dr tells me to take, I did for 3 years, it didn't make a jot of difference.

So, good people, am I a hypochondriac?

What would you do at your next Dr's appointment?

[ITYFIALMCTT]

Do you have the ranges for the blood work that you gave - it's important for their interpretation as the ranges vary from one lab to another.

You'll be asked if that was a fasting blood test? Taken first thing in the morning after not eating since the previous night.

Do you have any results of vitamin or mineral level blood work to share? Are you currently taking any supplements or medications?

Good Luck - someone knowledgeable will be along with helpful suggestions and the above questions will help them with a fuller response.

[Dancingdaisy128 in reply to ITYFIALMCTT]

Thanks for the reply.

No it wasn't a fasting blood test, it was done in the afternoon so I'd eaten lunch just before.

I've had no other blood work done and I wasn't given the ranges, my GP said I didn't need to know the figures, I only know the results I have because the Endo sent them via email when he told me to leave him alone.

[ITYFIALMCTT in reply to Dancingdaisy128]

In that case when the More Knowledgeable People arrive to comment, I think you're strongly going to be advised to obtain a Medichecks or Blue Horizon set of appropriate blood tests or be given a list of tests for which to ask your GP if your GP is likely to authorise them.

By and large the advice is to have a fasting blood test as your TSH level is more likely to be at its highest reading in the morning and it drops after eating - so it can distort the clinical picture for people who want assessment for hypothyroidism.

[Dancingdaisy128]

Right, I'm obviously a hypochondriac as I've just sweet talked the receptionist at my GP surgery and she gave me the following...

July '17

TSH 1.6 Middle range in the box

T4 11.4 Range 7.9 - 20.0

T3 4.8 Middle range in the box

February '16

TSH Middle range (She didn't have numbers)

T4 13.5

T3 Middle range

Sp apart from my T4 dropping there is little change.

[ITYFIALMCTT in reply to Dancingdaisy128]

You might want to pop those results into your original post using the edit button.

I think you'll still strongly be advised to consider purchasing a Medichecks or Blue Horizon panel as it can be useful to know what the fasting TSH level is plus the various vitamins and minerals.

Has your GP ever tested your ANA or requested any tests to assess you for auto-immune disorders? It's not that any are coming to mind but you have such a range of symptoms that it seems like an obvious question.

[Dancingdaisy128 in reply to ITYFIALMCTT]

No other tests have been done, but they are something I shall be asking for, and if he says no then I will go private as I'm not risking my health any longer.

[ITYFIALMCTT in reply to Dancingdaisy128]

It's just that it sounds like you're in a Grandmother's Steps pattern with the symptoms of metabolic syndrome - and that is often associated with thyroid dysfunction as well as some autoimmune conditions.

If your GP won't request the tests it might be worth the financial investment of obtaining your own because this is plainly have a substantial impact on your quality of life.

[Dancingdaisy128 in reply to ITYFIALMCTT]

My cholesterol is good, like a teenagers apparently. The only reason the GP said I was at risk of Type 2 diabetes is because I am obese...I'm 5' 11" and 14 stone, so we're not talking huge, just tubby

I eat well, rarely drink alcohol and exercise when my body permits. Up until 10 years a go I was a right gym bunny, steady weight of 12 1/2 stone and lots of exercise, I just can't do it now as I'm too tired and every joint in my body hurts on bad days.

It's a vicious circle.

[Nanaedake]

Well, it's good to meet you here and I'm glad you've joined. Your story is very familiar in the sense of being fobbed off, sent away with anti-D's and told it's all down to the menopause. I too had a partial thyroidectomy and NHS approach to aftercare didn't help. Getting myself better has been trial and error based on advice from this forum and from what I've read.

My thoughts based on my own experience is that although there is not a lot of research yet, there is good scientific research to evidence that people with thyroid conditions suffer from vitamin deficiencies. Whether that is a result of reduced thyroid volume or some other mechanism I don't think anyone is quite clear yet. Always get all your blood test results with laboratory ranges.

I would get Vitamin D, B12, folate and ferritin blood tests and get a copy of the results. Don't take the doctors answer that everything is ok at face value. The NHS only has to treat if you fall below an NHS range, however this doesn't optimise your health. All vitamins need to be mid-range with vitamin B12 top of range for us to feel well. They all work together. When you've got the results post them here and people will tell you what you need to do. YOu can get blood tests from reliable online labs if doc won't do them. Thyroid UK's website lists reliable labs and people here use them regularly.

You can also register online to view your NHS blood test results. You do this through your docs reception, ask for enhanced access and blood test results and you'll need to get a password from them and login to set it up.

There is possibly a link between the gut and thyroid conditions. Have you ever been tested for thyroid antibodies TPO and TgAb? I would get those done too. It would be helpful to know as people with antibodies can have gut problems and you could do various things to help such as trying probiotics or gluten free.

If you are on any medication, I would consider whether those are giving you side effects that might not be immediately apparent and once you've optimised vitamins, see if you can reduce or do without them (get docs advice).

I would search Diabetes UK website for best diet advice. They recommend a low carb, high fat diet (good fats like olive oil). I think regulating blood pressure is important for diabetics so could help?

Here is an interesting article posted recently by one of the forum members which explains a lot about vitamin D

drgominak.com/sleep/vitamin...

The NHS doesn't deal with nutrition, gut imbalance, sleep and vitamins unless you're about to keel over and die, have serious allergy or get rickets, so time to take control - which it seems you've started to do!!

[Dancingdaisy128]

Thank you for your reply.

I have never been tested for Thyroid antibodies. Someone I work with suggested that and this site so that I could gain more information.

I suppose it is easy for me to blame everything on my thyroid but believe me, I don't actually want anything wrong with me lol I just know that something is amiss and I need to sort it out.

[Nanaedake in reply to Dancingdaisy128]

Well, it is probably all linked to thyroid or homonal balance. We can eat the best diet in the world but still be deficient in nutrients such as vitamins and minerals and this can linked to hormonal imbalance and affect our thyroid and gut etc.

[Dancingdaisy128 in reply to Nanaedake]

I'm directly quoting my GP now.

When I said I didn't want to continue with the HRT as I didn't feel that shoving a load of hormones down my throat would help as it hadn't helped for the last 3 years he replied with...

"Hormones and hormone problems are just made up things in women's minds, excuses my wife uses to get out of cooking the tea"

I really should change Dr's....

[greygoose in reply to Dancingdaisy128]

If I were his wife, he'd get his 'tea' in his face! Or his lap, as my ex did. Of all the misogynistic b******ds! Words almost fail me!!!

[Dancingdaisy128 in reply to greygoose]

Oh he's one of those GP's....thinks he's gods gift to women.

Ok, he might be quite good looking, with a fit body and twinkly eyes....LOL

[greygoose in reply to Dancingdaisy128]

They're the worst! Give me an ugly doctor any time! Well, just an ordinary, plain-looking doctor, anyway.

[Emyloulou in reply to greygoose]

Oh I don't know, mines a bit of a dish, really nice and a good GP. Unfortunately he's also married with 2 kids and 10 years younger than me 😂

[greygoose in reply to Emyloulou]

lol

[Nanaedake in reply to Dancingdaisy128]

Yes, I agree, you really should change doctors. Clearly his medical training is inadequate as he's not taken on board the fact that women's bodies are very, very sensitive to anything that interrupts or affects hormonal balance otherwise our bodies would not be able to respond to childbearing. Evolutionary fact.

Women's exquisite hormonal sensitivity however, makes them susceptible to both environmental and nutritional factors that alter the balance of hormones. It seems the NHS is built on male priorities and mainly male led research that ignores the critical importance of precision hormonal balance for women.

Since we must be economically active for much longer than in the past, the NHS needs to provide effective advice and support for hormonal balance and stop handing out anti-D's like smarties.

[ITYFIALMCTT in reply to Nanaedake]

"Since we must be economically active for much longer than in the past". Exactly! I keep waiting to see that previous guidance that included ages has altered because of this new reality.

My MIL is in her 80s - and one of the reasons that she seems to get excellent medical care from her GP and consultants is that she's still working (part-time but even so) and they want to keep her doing that as long as she feels up to it.

[crabapple in reply to Dancingdaisy128]

I'm with greygoose on this one, no matter how pretty he is!

[MikeM46 in reply to Dancingdaisy128]

Wonderful comments from your GP. I'm seriously contemplating writing to the chair of the RCGP to point out that so many quite extraordinarily ignorant GP comments are being relayed on Thyroid forums.

Your seems one of the "juicier" ones to best exemplify the worrying ignorance and need for a mandatory cpd refresher course for GPs (And so many Endos aten't s great deal better!

Btw, if on testing, your B12 level is low, a quick & effective way of bringing it up is with a sublingual spray.

Looking forward to your thoughts...

[greygoose in reply to Dancingdaisy128]

If you had nodules so large that half your thyroid had to be removed, there was something basically wrong, right from the start. Do you know if they tested your hormones at the time - I imagine they must have done. But, did they tell you the results?

Next time your arrogant, useless doctor tells you that you 'don't need to know the numbers', inform him that it is your legal right, under the 1998 Data Protection Act, to have a print out of the results - all the numbers - results and ranges! And, if he refuses, he is breaking the law, and you will take measures to ensure you get them. Cheeky s*d.

What you've been given - 'middle of the box', indeed! - is not adequate. You need all the details. And, as others have said, you need your antibodies and nutrients tested :

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

Those are the basics. But, I realise full well, you won't get them all on the NHS! So, would you be prepared to invest in your future, and get them done privately?

thyroiduk.org/tuk/testing/p...

Details of private testing here. But, wait until next Thursday before ordering anything, because they have special offers on Thursday.

No, you are not a hypochondriac. I don't believe in hypochondria. If someone feels there is something wrong with them, then there is something wrong with them. I detest all psychiatric mumbo-jumbo. Doctors think they're too clever by half, 'diagnosing' depression, and dishing out antidepressants - aka go-away pills - like sweeties. They are not trained in the workings of the mind, anymore than they are trained in the working of the thyroid. So, why do they think they know one, and not the other? You know your body. You are inside of it. If it's not working correctly, you will be the first to know! So, have the courage of your convictions, and stick at it! Get to the bottom of it, and then rub medical noses in it! You will get well!

[Dancingdaisy128 in reply to greygoose]

Thank you! That brought a huge smile to my face.

I'm going to give the GP one last chance and if I don't get what I want then I will do the tests privately. Once I have the results I shall go in, show him and then wander off and join another surgery.

I must get on with some work for now, but thank you all for your responses.

Have a good day all

[greygoose in reply to Dancingdaisy128]

After that comment about cooking his 'tea', I don't think I'd want to go back to him. You'll never get anywhere with a man like that. He is basically anti-women. He just doesn't want to know. Find yourself a decent human being for a doctor, next time.

[Dancingdaisy128 in reply to greygoose]

My Endo in Plymouth was absolutely wonderful, I remember him telling me that although my results were within normal ranges I obviously had a thyroid issue because of my nodules and if I didn't take Thyroxine for the rest of my life I could end up with brittle bones, heart problems, gynae problems....if only they were all like him hey!

[greygoose in reply to Dancingdaisy128]

If only! But they are a rare breed.

Of course, you could always try self-treating.

[Dancingdaisy128 in reply to greygoose]

I'm a bit scared of that tbh. I'll get the results first either through my GP or privately and then take it from there I think.

Thanks again

Must go to work....

[greygoose in reply to Dancingdaisy128]

You're welcome. Bon courage !

[spongecat in reply to greygoose]

Greygoose on form this morning!

[greygoose in reply to spongecat]

Yes, I am! How did you know? lol

[Tiddlywink2 in reply to greygoose]

I second that! These would be the tests I would think are appropriate given your levels, history and continued symptoms. Just for giggles, and to see him froth at the mouth, demand a test for reverse T3 ..

[greygoose in reply to Tiddlywink2]

If you want your doctor to do you a favour by testing as much of this list as possible, I don't think it's a good idea to antagonise him, 'just for giggles'.

[jgelliss in reply to greygoose]

greygoose your on a roll . LOVE IT !!!!!

[Tiddlywink2 in reply to greygoose]

Not to antagonize anyone..I just think it is a test worth having but it seems to never get on the list.

[greygoose in reply to Tiddlywink2]

It's a very expensive test, and not of much help in the ordinary run of things. If your FT4 is up the top of the range, or over, and your FT3 is low, then your rT3 is going to be high. But, that's not a problem. It doesn't harm you. It's just natures way of reducing waste, because the rT3 is then converted into T2.

There are cases where the rT3 level can give useful information - but don't ask me which cases, 'cause I can't remember. But, this isn't one of them.

[Tiddlywink2 in reply to greygoose]

I think I made note of it when reading because it seemed to apply to me. (of course now I can't remember why) But I met with resistance when I asked for that test and others. I'm in the process of changing doctors now.

[greygoose in reply to Tiddlywink2]

They don't test the rT3 on the NHS. Doctors, for the most part, don't even know what rT3 is! But, it's nothing to worry about.

[Hidden]

Hi, just one more thing you might want to consider is iodine deficiency. Iodine is needed by the body for thyroid function and copper helps to utilise it. Almost all of your symptoms can be symptoms of an iodine deficiency, although I do understand that symptoms cross over with other things but I think it would be worth checking out. How much iodine do you think you get in your diet?

If you can get an iodine loading test (its the only test I know off but perhaps someone else can suggest a better alternative).

When taking thyroid replacement, the iodine needed will be contained within the medication but if you no longer take thyroid meds you just might not have enough for the needs of your natural production of thyroid hormones.

[SeasideSusie Remembering in reply to Hidden]

No, not the loading test where you take iodine before hand. Almost all those come back showing deficiencies see the pdf cdn2.hubspot.net/hub/446347...

The non-loading test is better, Genova Diagnostics do a 24 hour urine iodine test, where you don't take any iodine tablets beforehand.

[Hidden in reply to SeasideSusie]

Thanks so much for that, never heard of the non-loading test myself but I will save it for future reference.

Thanks again

[loueldhen]

What is your good diet? Gluten free helps with thyroid issues and grain free is better for me. It's worth a try. Takes a few days to work out if you'll feel better. I can guarantee you will lose weight.

[Clairewalker751]

My mum has been hypo for almost 30 years she had never heard of thyroid antibodies until ingot diagnoses in February this year joined this site and did A LOT of reading! She has been given a TSH test annually and that's it she is obese and the doctors all told her every ailment she has is because she is fat?!? I persuaded her to have a medichecks ultravit test and her thyroid levels look good but I suspect she has had a hashis flare however her vit levels were rock bottom her antibodies in the 700s and high inflammation she took these to the doctors as I think she needs B12 injections and he wouldn't even look at the printout grrr despite living in a different city ive demanded to go with her next time armed with all evidence I've collected. My GP a young women has agreed to solely use my medichecks results and said treats the patient not the numbers and agreed to increase my dose to 150 despite a surpressed TSH and T4 and T3 in middle ranges and I feel MUCH better and i would resort to self medicating if necessary because I know how crap it feels to be low in thyroid hormones! You are not imagining it ! My periods also stopped but have now returned I am 45. Good luck and stay empowered !!

[bunnyvalentine]

Your post made me sad. It sounds as if you've been going through this for such a long time. FT3 and FT4 will be the important measurements as well as getting tested for antibodies. I'm sure you've had an ultrasound - did you get the results? Did it say if you have homogeneous or heteregenous echotexture? That tells you the state of your thyroid - if it's been under attack the look of your thyroid is uneven, not smooth - so heterogenous.

Your thyroid has its "hand" in everything. Without proper thyroid your other hormones will be affected, your digestion, your mental health etc.

I would certainly at least recommend changing your diet and removing gluten and dairy - those or highly inflammatory and I'm sure you'll see relief in digestion as well as your joints.

I hope you get more extensive testing.

[Hidden]

If your basal temperature is permanantely low under 36c then I'd suggest you get a private test done for your adrenal glands as all your symptoms and your history point towards fatigued adrenals .. the Gps wont accept that the adrenal glands can completely control your body and organs and especially as as part of your thyroid has been removed .. I've spent years arguing with the Gps about my symptoms.. And since taking natural hormones for both adrenals and thyroid have felt like I'm finally getting well after 25years ... and all my symptoms that were similar to yours have disappeared -

Google adrenal fatigue and see what you think.

all the best

[Phoenix605]

Having read your replies below, dump that GP and dont look back, he is an arrogant tit who obviously hasnt heard of the sex discrimination act. I saw 4 before I found my current one who isnt perfect but I have successfully nudged her in the right direction, listening to you is a good start. Its not like you dont have a documented thyroid issue after all.

Tendonitis, depression and anxiety are primary hypo systems - their appearance are how I tell I need a dose raise.

I assumed I was starting menopause after my periods dwindled to 12 hours on average, I finally went to GP due to hair loss thinking I might need HRT. Results came back and no menopause indicators but low thyroid instead. The main downside to proper thyroid treatment, yup you guessed it , periods are back and had to start shaving legs again! My GP seemed very surprised but they cant put THAT down to a placebo effect or a 'womans mind'.

[Phoenix605]

Forgot to add, you are legally entitled to your blood test results including the ranges.

If you find a better GP and he agrees to tests you need to follow good testing protocol. TSH follows a circadian rhythm so test time is paramount. The earlier the better but by 9 at the latest and after an overnight fast, water only and no supplements til after test. Late tests and eating first can be the difference between getting a levo trial or not as TSH drops through the day and after eating. If you take a B complex containing biotin stop for a week before if poss as it can skew thyroid test results (some use a biotin assay).

[Dancingdaisy128]

Thanks to all of you 😘

I'm currently on my phone but will read all replies properly when I'm home.

Ironically my dad is very poorly and was blue lighted to hospital, his heart, his kidneys, his blood have all been affected and now he has sepsis. Guess what, he has an autoimmune disease which they are investigating further, likely he's had it for years!!!! It beggars belief.