I think I have Hashimotos and No One will listen

[Gravata_Bblu]

I have all the symptoms. All. The. Symptoms ... right down to excessive ear wax and costochondritis (pains in ribs/ inflamed sternum). I have chronic upper back pain, PMS, other lady troubles and all the other misery-causing things I have been living with for the last ten years at least. (depression, anxiety, brain fog, hair loss, weight gain, swollen hands & feet, always cold, etc. etc. etc.)

So I foolishly decided to go to the doctor... This is my story so far.

Visit 1: Saw a locum GP. Burst into tears in his office. Asked him if I could have a cortisol test (Having read Sarah Gottfried's book, The Hormone Cure, I thought this was a reasonable thing to ask). He laughed in my face and said "Oh, we never test for that."

The GP told me I was anemic (no blood test to back it up) and shoved a photocopy list of self-help books into my face. One of the books he recommended, was called something like "Why women can't read maps...". This "document" drafted by the GP himself, basically advises that everything will be OK as long as I BELIEVE. Like we're all living in a Disney movie, right? (cue, Frozen's Let it Go... cause the cold never bothered us much anyway, right?). Told the GP I think it's my thyroid, and so he said, OK, we'll do a blood test "to humour you."

Got the result. Receptionist told that my TSH was 2.6 (range 0,5 -5) which is "normal". The GP who saw me and the GP who reviewed the results were not the same person and when I asked if the GP who reviewed the lab results had looked at my medical notes, the answer was "Oh no, they don't need to do that."

I asked for a second opinion and was told I had to wait for 2 weeks to get an appointment. When that did not dissuade me, the receptionist then reluctantly booked it for me.

Visit 2: Arrived at the GP's office, armed with a folder full of research and info. I had spent my two-week wait wisely. For I too can make photocopies and I was primed and ready). Upon my arrival, I was told there was no appointment booked. So I kicked up a fuss and refused to leave the surgery until someone saw me. There was a kerfuffle in the back and I heard someone say, 'You really should have booked the appointment.' to which the answer was, 'she's just another one of those "crazies" who likes the attention'. I found that odd, because we had recently moved to the area and this was only the third time I had actually ever been in this GP's office.

Then miraculously, the GP called me.

I was told by the GP that the TSH was "normal" so he doesn't understand what the fuss was.

I handed him a typed up list of my symptoms (two pages long), and he just nodded and said, hmm.

Asked him if my T4 was tested. Answer: No. Asked if they would test for T3 and T4 and antibodies. Answer: No. Asked to be referred to an endocrinologist. Answer: (and these are the GP's exact words: "Endo's are science/ lab test-type people. If you think I am not listening to you, then you have no idea how unsympathetic an endo will be, so...No.'

I then proceeded to grill the GP with questions while I kept handing him my own photocopies of studies and information about hypothyroidism. He actually got some of the answers wrong! I could see his face and body language change during this exchange, because little ol' me - the crazy potentially hypothyroidic woman- had dared to question his medical expertise and had caught him out. He was not a happy bunny.

GP's opinion: "You don't have hypothyroidism because your TSH is "normal". You are not presenting as a Hashimoto's patient, but I'll do some more tests because you "might" have an autoimmune issue or you might be anemic (the first set of blood tests for anemia were normal). But don't pin your hopes on getting a diagnosis any time soon because your situation is "complex" and it's going to take a long time to get to the bottom of it. Oh, and just so you know, I'm going on holiday next week, so you're just going to have to wait until I come back." So basically, "code" for "you are a crazy person and you are wasting my time and the NHS's money".

So my bloods are off to the lab (still not completely sure what tests he ordered) and now I'm waiting.

I am feeling really ill and low and scared and worried. Am I crazy? The bundles of hair in my hairbrush every morning are real enough. Surely it's not all a figment of my imagination? I don't have the money to go private and I honestly don't know what I'm going to do.

Can anyone help with some advice? What more can I do to make them listen to me?

[humanbean]

I know exactly how you feel, having gone through similar consultations with doctors myself.

It is always difficult to know what people think "going private" means. If you think it means trying to find a private doctor who will charge £300 - £500 per consultation, try to persuade an NHS doctor to refer you, and then it will cost hundreds of pounds for blood tests which you must pay the private doctor (again) to interpret, and then you'd have to pay more hundreds of pounds for private prescriptions, then you'd be wrong. (These were my beliefs until relatively recently - I thought just getting a full blood count done privately would require me to re-mortgage my house.)

If you want blood tests done, you can pay for them to be done, and they aren't as expensive as I used to imagine them (although they are expensive, and I wish I could afford more of them). You don't have to see a doctor at all, either NHS or private. You can learn how to interpret them yourself. You can get lots of help from this forum where there are lots of knowledgeable people who have experience of the things you are going through. Doctors aren't the only ones who can read and learn. Patients can do it too. And finally, you'd be surprised how much you can improve your health with supplements and even prescription-only medications bought on the internet without prescription. You have to ask for advice from here which sites are trustworthy.

There are loads of very useful websites out there that I never guessed existed and it would never have occurred to me to even look for before I started using thyroid forums. For instance, the British National Formulary (BNF), the publication your doctor consults to look up things he/she can prescribe, interactions, dosages etc is available online for free. I've found things I wanted on that site that I discovered weren't even prescription-only medicines and I could just buy them at the chemist. I don't have to beg and plead any more. It's great!

evidence.nhs.uk/formulary/b...

I don't know if this is the kind of advice you were after. But I don't think you are crazy at all, and nor will the other members, because many of us have similar stories of being belittled and dismissed.

[Hidden]

Humanbean right. Consider paying for a full thyroid test privately including Free T3 and antibodies. You will then have more knowledge.

Post your FBC when you get it. I hope he tested ferritin.

Do you drink milk?

Do you have any gut symptoms like bloating/reflux? I take it you have constipation. But any others?

Has you cholesterol ever been tested or your kidney function (GFR rate?)

[PattyOdores]

Can you find a new GP?

[humanbean]

With reference to some specific points in your post, I would agree with the GP who said what he did about seeing an endocrinologist. They are almost all diabetes specialists, and as a group they have very little knowledge about the functioning of the thyroid.

This sums up the experience of many people who have seen one :

youtube.com/watch?v=WOdjCb4...(Not working as expected?)

There are, apparently, a few endocrinologists who are still human and have some thyroid knowledge, but they are rare. I've never seen one myself (and don't want to!), so I can't comment from personal experience, and I may be excessively prejudiced.

On a more serious and practical note, you need to start making sure that you get copies of blood test results, including the reference ranges, and start keeping records to monitor your own progress. You need to tie "how you feel" with particular blood test results. It will be useful when you want to supplement or treat yourself in future.

One thing you might be able to persuade a GP to do is to test some of your minerals and vitamins. Being hypothyroid affects the gut and reduces absorption of nutrients so many of us discover we are low in range or deficient in nutrients and need to supplement to get to optimal levels. The first nutrients to test are vitamin B12, vitamin D, folate and ferritin. It would be nice to get iron as well if possible, but many labs won't test iron unless ferritin is below the reference range. It would also help if you got a full blood count to go with the above tests. All these tests should be done by your GP, there should be no need to get them done privately. Once they've been done you should get copies of the results from the surgery, and then post them here. Being told they are normal means nothing. You need copies yourself.

[Rosy_Holly]

I saw an endo recently. I chose one from the thyroid uk list. He was very kind and helpful. He does not believe I have a thyroid problem. However he did say I had a physical reason for my problem and wrote to my doctor asking him to carry out some tests. Now having them done. He did say whatever was wrong with me was probably affecting my thyroid. Have been hypo for 30 years. I think my doctor was a little surprised by the outcome as he did not think it necessary for me to visit an endo. I was looked after very well by the hospital for my appt, which lasted 3/4 of an hour. I had a b.p., weight and height check and physical check by the endo. Who asked me a number of questions and also my husband. It cost me £200. I have a number of odd symptoms, certainly don't feel so stressed out about them or a fraud now. Considering I have had to go to a&e 6 times this year by ambulance at a cost of at least £200 a time. It would have been well worth the nhs paying for an endo in the first place.

[Gravata_Bblu]

Thank you so much for all of your advice! I am, amazed to see how many thyroid patients are actually treating themselves, because doctors won't. It's an absolute travesty. You will never know how much it means for someone to say the understand.

@Aspmama - I really do have all the symptoms. I have a range of digestive issues. IBS-type symptoms that swing from can't poop for days to can't stop pooping for days, acid reflux, stomach cramps. My last GP gave me proton pump inhibitors to "ward off an ulcer" (ironic) and told me to eat more fiber. He even explained to me in slow words (so my ladybrain could understand) that the fiber is found in the stems of the broccoli...

I am, at this stage, still eating both dairy and gluten. I foolishly thought I should consult a doctor to establish what's wrong with me first before I changed my diet. I see now that this was complete folly on my part. I am told kidney functions are "normal" (whatever that means) but I've not had a cholesterol test as far as I know. My BP was 147/89 in the GP's office which he called "normal" but is actually pre-hypertensive, but it could have just been because I had thrown a wobbly outside his office.

@PattyOdores - We live rurally. Very rurally. All you find out here is mostly old people and sheep. My husband and I have taken to calling the GP Leopold Leopoldovich... it's pills and ointment all the way. The next nearest GP is miles away and won't take us because we are out of his patch.

I do take your point on keeping my own records. I will get the results when I see the GP next. Leopold has now committed himself to getting to the bottom of my "complex issues", so I shall hound him for blood tests until the end of his days...

Thank you also @humanbean and all the others for the helpful tips. I will keep reading and learning about this stuff. I am going to start making the changes step by step. Knowledge is power, right?

[galathea in reply to Gravata_Bblu]

Acid reflux, burping, bloating.... Last thing you need is proton pump inhi bitors.... Have a look at the info below, and consider doing the bicarb of soda test...... If it turns out you are short of acid, get some betaine hcl from amazon.....

scdlifestyle.com/2012/06/hy...

A fairly comprehensive set of tests is available from blue horizon.... If you use the thyroid uk discount, they will cost you £89 plus about £15 for a blood draw. Or opt for the finger prick one if you can stand to make your finger bleed enough to fill a small testube.... Check out private tests on the thyroid uk website. Http//thyroiduk.org.uk.

g x

[Gravata_Bblu in reply to galathea]

Thanks for the advice! Yup, that sounds familiar. I get the windy-pops and tummy acid all the time. I'll look into this.

I think I am responsible for about 50% of all internet traffic on thyroiduk's website at the moment I can't tell you how helpful the information has been.

GP Leopold said I shouldn't believe what it says on the site, because the people there aren't doctors and they don't know what they're talking about, but I think they are awesome.

[humanbean in reply to Gravata_Bblu]

"My BP was 147/89 in the GP's office which he called "normal" but is actually pre-hypertensive, but it could have just been because I had thrown a wobbly outside his office. "

If your BP was that level when you had just thrown a wobbly, then I really don't think you need to worry about it.

You can buy BP monitors at Boots and Tesco and other pharmacies these days and many of them aren't expensive. Go on to Amazon and do some research - read reviews and find something you would be happy with, and then shop around online and off. I've got one by Omron, and this is a make many doctors use in their surgeries. I think the ones that involve using a cuff round the upper arm (like the doctors ones) are to be preferred over the ones that go around the wrist. Make sure you measure your upper arm before buying. The cuff must be the right size.

[Gravata_Bblu in reply to humanbean]

Thanks humanbean! My hubby actually has high BP so we have one of those floating round the house. I will start checking mine. I think my blood pressure (despite the fact that I am a well-upholstered lass) is actually on the low side tbh. And yes, it was an epic wobby!

[goldfishgoddess]

See if they will do an antibodies test for Hashimoto's. That should at least get you started. Then if they won't give you a trial of thyroid hormone to see if it will alleviate your symptoms, you could always purchase it yourself and start a small dose, using a diary to record symptoms.