Advice needed

[Ashley124]

Just wondering if I could get some advice off other people. I got referred to a endocrinologist because I had a thyroid test back in December that they said was abnormal but borderline (TSH: 9.78 FT4:18 & positive antibodies) I had went up to complain of symptoms that include tiredness to the point where I could barely get up, hungry all the time but not being able to get the food down, weight loss, headaches, night sweats, anxiety, terrible crying spells for no reason, pins and needles in hands & feet, leg cramps & also going yellow now and again. The tests results I got done while seeing the endocrinologist were TSH: 11.36 FT4: 19.7 FT3 6.4 25 OH vit D: 166.5 and he said I still have positive antibodies. He rang yesterday and said everything is fine but he wants to discuss it with me. I just got a vibe off him that nothing is going to come of this and when I first seen him he wasn't even really listening to my symptoms as when he wrote back to my doctor he said I had symptoms I never even said I had in the first place. I was just wondering if these test results look ok to anyone else? I don't know much about the thyroid so don't really know what to think.

[Heloise]

Ashley, I can't believe even if you live in the UK they are saying this is normal. You are definitely not well and those test results are not normal. You may have Hashimoto's and need treatment immediately or you have a pituitary problem. The puzzling part is that while your TSH is utterly high, your FT4 and FT3 would be very low and they also seem to be high. Do you have the ranges handy and see where they fall. What is wrong with these people. We strive to get our TSH down to 1 and most of us would be ill if it goes over 3 and here you are at 11. What symptoms did the doctor say that you don't have? He may have found issues during the exam that you weren't aware of. You definitely need to be seen. Maybe someone else here has a better explanation.

[Ashley124]

Thanks for your reply. The ranges are TSH: 0.4-4.0 FT4: 9.0-25.0 FT3: 2.8-7.0. It all started back last year in April and I've never felt the same since. When I got referred to my endo at the time my TSH was 9.78 and my doctor said that she would refer me due to my symptoms but they probably wouldn't treat me because it was just borderline and it would have to go over 10 and now it has and still I don't seem to be getting anywhere with them. The endo wrote back to the doctor and I got a copy of the letter and he said that I had reported mild weight gain which I never I said that I had lost weight and he also said that I said it has only been going on for a few months which I also never I made sure it was clear to him that it has been going on for over a year. As soon as I walked through the doors to see him he said your symptoms just don't make sense.

[greygoose in reply to Ashley124]

Ask for a second opinion. You are well and truly hypo AND you have antibodies, you should be treated. You are actually hypo when your TSH hits 3, and in some countries you would be treated at that number. It's only in the UK, that the sadistic NHS likes the TSH to reach 10 before offering treatment. You're going to have to start insisting.

The trouble is, endos know very little about thyroid. 99.9% of endos are diabetes specialists - although the name suggests they should know about all hormones, they really don't! And they certainly know nothing about symptoms. They believe there is a rigid divide between hypo and hyper symptoms, which isn't true. I once had one tell me that I couldn't possibly be hyper because I had high blood pressure, and hypos are supposed to have low blood pressure, so he ignored my TSH of 9.5 and said I was hyper! lol I had to give him a good talking to! So, if you told him you'd lost weight, that would be why he said your symptoms didn't make sense. Weight-loss is usually a hyper symptom, and he hasn't the wit to know that symptoms can cross over.

[shaws Administrator]

Your TSH is over range and in the UK we get diagnosed when it is 10. In other parts of the world we'd be treated with a TSH above 3.

The puzzling part is that your FT4 and FT3 are high so I hope someone comes along soon who can suggest what can be causing such a high TSH.

If your symptoms didn't make sense to him he should have sourced a person with more knowledge.

[shaws Administrator]

This is a past post about high FT3 and FT4 and TSH.

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

As you have high antibodies this is autoimmune thyroid, also called Hashimoto's.

Very common to also have low B12, folate and ferritin as well as low vitamin D. Have these been tested yet, if not ask GP to do so. If any of these four are too low they prevent us being able to use thyroid hormones in our cells

Pins and needles are symptom of low B12. Do not supplement any B vitamins (or even multivitamins) before full testing

b12deficiency.info/signs-an...

Going yellow, indicates possible transient liver problem. Do you know if you have Gilbert's syndrome? (High bilirubin). Medics say Gilbert's syndrome gives no symptoms, but many who have it would disagree.

We process our thyroid hormones in liver, so sluggish liver might affect thyroid too.

Read as much as possible about Hashimoto's on here and elsewhere. You might want to consider a gluten free diet, many of us find it helps reduce symptoms

The Thyroid Pharmacist website & her video series the Thyroid Secret on you tube have masses of info about Hashimoto's

Amy Myers and Chris Kresser are good sites too

You can email Louise at Thyroid Uk for list of recommended thyroid specialists

[e-mail]

[Ashley124]

Thanks so much for all of your replies it means a lot. I started to believe I was imagining these symptoms because he doesn't seem to fussed about them. I'm not sure if I've had the b12, folate & ferritin tests but I am going to ask for a printout out of all 4 blood tests I had done on the thyroid to see what is what. One thing that keeps being repeated is that my immune system is attacking my thyroid. I have a lovely gp that totally understands and he was sure that I would be treated so I think he will be quite shocked when I go back and nothing has came of it. I have an appoinment on the 31st July so I will do all my research so I know exactly what I am talking about when I go up. I will post back on here once I have been.

[melville999]

There is a lot going on.As someone suggested it would be good to ask for a second opinion.It does not fit with a straightforward hypothyroidism.sometimes if you have symptoms that cross several specialty boundaries you could ask to see a general physician who may he able to 'tease out' what further investigations are needed for separate symptoms,like the Going yellow' needs blood tests and at least a liver scan.The thyroid s a different line of investigation.There is clearly a t least 2 illnesses going on.The doctor who says it doesn't make sense is trying to fit it all to one thing.Its hard to push your own medical care but you need to rattle the cage in the NHS sadly.Take some one with you if it helps,or a patient advocate.write a letter with your concerns.That is hard for them to ignore.never give up.The answer is out there and hopefully the ability to make you feel better than at present.Trust your body,its giving them all the clues.take care

[Ashley124]

Thanks for your reply. Yes I was thinking 2 things might be going on here aswell and that might be why he is getting confused with it all. There are a few medical problems that run through the family like arthritis, thyroid problems, and coeliac disease. Although I have been checked for coeliac disease and it all came back fine. Although I'm feeling dreadful at the moment the symptom I'm most worried about at the minute is the weight loss. The weight loss is due to not being able to eat though it's not just for no reason. I really struggle to get food down even though I am so hungry. It's as if my stomach is saying one thing and my throat is saying another. I just can't seem to get it down.