Waiting to be reffered for ultrasound and to endocrinologist.

[Bushbaby83]

I just thought I'd post in case I could help others. After 3 years of symptoms and only having my TSH checked and it being within range (3.09 & 3.13) I went back to my doctor and he examined my thyroid and told me it was swollen. He gave me TPO antibody test which came back as normal (12.7). Again I was left scratching around for answers so I took a private test from Blue Horizon (6 Plus) (best £70 ever spent) which showed my TSH as elevated (4.94) because I did the test early in the morning on an empty stomach and in addition my TgAb were almost double the high end of normal (210) indicating Hashimoto's. I went back to my doctor and am now being referred to an endocrinologist and for an ultrasound of my swollen thyroid. I just wanted to share in case there were other people out there that are being fobbed off by doctors due to their budgetary constraints. I too would have been fobbed off knowing deep down something was wrong if I hadn't of sought advice from a friend who is a sufferer. Only you know your own body. Your symptoms don't miraculously disappear because your blood tests come back normal. There are other things the doctors can test for but don't because of budgets! Sometimes tmyou have to take matters into your own hands and don't be afraid to be wrong. Who cares if you find out it isn't your thyroid. At least then you will know for certain! Good luck!

[hebden]

Thanks for posting and your words of encouragement. I am definitely being fobbed off again and again. I took the BH test in sept but because I had just changed surgeries I have been too anxious to show gp the results. I spoke to him about my symptoms and concerns but he just said it isn't likely to be thyroid as it is rare (according to uk doctors anyway) well it would be if its not tested properly. No its because TSH hasn't reached the magical 10 yet. It was 6.90 at previous test and BH test it was slightly lower at 4.? (sorry brain fog) GP did give me another blood test (only TSH again) which I am seeing him for the results next week. I have just started Thyroid s as I have no faith that Im going to get any help at all from professionals and I am sick of feeling this way.

[Bushbaby83 in reply to hebden]

Hi Hebden,

Really sorry to hear this. You should definitely take your results to your doctors. Maybe ask to see a different doctor if this one is being obstinate. Is your thyroid swollen at all? Ask for a physical thyroid exam. That may prompt them to refer you for antibody testing. What did the BH test reveal about your thyroid? What time of day did you do it and was it after fasting? It is important to know that the patient charter gives patients to right to a second opinion or referral to a consultant if necessary. It could be worth looking it up so that you can quote it should you need to. I know this insidious disease can knock your confidence but your health is so valuable. If you've got test results that suggest your thyroid is struggling and you're having hypo symptoms then you mustn't let them fob you off! Good luck.

[hebden in reply to Bushbaby83]

Hi Bushbaby83. I did the BH test fasting @ 8am as advised on here. There was a note on the bottom of email from BH saying I should have to increase thyroid meds as thyroid was struggling, but Ive not been prescribed any thyroid meds as doctors think its all in my head. I have seen so many different gps in the last year and I only got help from a locum at my last surgery but she was no longer available after the first appointment so saw another gp after her who went back on what the locum had suggested. I then changed surgeries hoping to get an understanding gp but have seen 3 different ones since august with no change. Thanks for the info on NHS patient charter I will have a read later when less tired. Thank you. Hugs Joolz.x

[Bushbaby83 in reply to hebden]

That's terrible Joolz. I can't believe the doctor is saying that they won't treat you when you're over the higher reference limit of 5. I think you should quote the patients charter and ask to be referred to a specialist. Good luck. I really hope you get answers soon. Xx

[hebden in reply to Bushbaby83]

Thank you. Doctors in this area seem to think 10 is the higher reference limit they don't go on symptoms I know this because Ive given them the thyroid uk list which Ive ticked most of the symptoms off. They just scanned it to med records and did nothing. hugs. Joolz.x

[Bushbaby83 in reply to hebden]

That's awful. What part of the country are you? Xx

[hebden in reply to Bushbaby83]

Im in Hampshire. The last time I said to my GP that I am 99.9% sure its all down to my thyroid my GP said he wished it was then he could give me a pill and send me on my way! Thats how much he knows!

[Josiesmum]

Well done for finding this out. It's unusual for GPs to test Anti-TG and your case shows why it's necessary. Hope you get some answers from Endo.

In the meantime, have you considered going gluten free, which may help reduce antibodies?

[Bushbaby83 in reply to Josiesmum]

Hi Josiesmum,

Thank you for your kind reply. I do intend to go gluten free with the help of a functional nutritionist . However, I'm scared that it will alter my antibodies before I get treatment. I feel like I need a two pronged strategy of medication and diet/supplements. I feel need the meds to boost my energy levels and help with joint aches and pains and diet to help me long term. My plan is to wait until I've seen the endo before I make any dietary changes. Plus I want to enjoy my last Christmas with the foods I love! 😂😂😂🙊🙈

[Josiesmum in reply to Bushbaby83]

Hopefully you won't have to wait too long for an appointment. In my experience it can be worth calling the secretary regularly to ask for a cancellation.

If you do go gluten free, I recommend weaning off gradually over a couple of weeks so it isn't such a shock to the system/gut. Enjoy your Christmas

[Bushbaby83 in reply to Josiesmum]

That's a great idea! I may do that as waiting for the letter is agonising.

That's great advice thank you. I had planned to use the period between Christmas and new year to to stop drinking and cut down on caffeine in order to make it easier when I'm back at work and have seen the endo. I'll definitely do that with gluten too once I've had my appointment.

Have a great Christmas too if you celebrate.

[Josiesmum in reply to Bushbaby83]

Incidentally, my daughter (who is not hypo but has CFS, low T3, low ferritin, low cortisol) got a big energy boost when she gave up gluten, then another when she gave up grains and sugar. Her joint pains, back pain and headaches disappeared and many other symptoms reduced. Prior to this we had no idea she might be sensitive to gluten.

[Bushbaby83 in reply to Josiesmum]

That's very interesting. I'm genuinely looking forward to giving it all up even though I know it will be difficult. I know that these foodstuff do agrevate me along with onion and garlic. I've had a cealiac test before and it came back negative but I know it still sgrevates me.

I'm glad your daughters symptoms have reduced or gone. It's great to hear about positive stories.

To me food can be medicinal. However, I just needed to know what I was treating first.

[Josiesmum in reply to Bushbaby83]

My daughter did the AI protocol and gradually as her symptoms have improved she's reintroduced foods. She's become very good at spotting reactions and now eats everything apart from gluten, dairy and nightshades, although it's obviously individual. I don't think diet alone is the answer but I believe it's made a big difference and the reduction in inflammation is allowing her body to heal, which is why I'm always banging on about food

thepaleomom.com/start-here/...

We're also doing other stuff, supplements for nutrient deficiencies and infrared sauna, but food has been an important part of the puzzle.

[Bushbaby83 in reply to Josiesmum]

What is the AI Protocol? I'm so pleased to hear your daughter has found answers. Food really can have a profound effect on health. Thank you for the link. I will definitely look into that. I had planned to definitely give up all grains. I've bought a lot of supplements before I got my test results back because I was convinced they were going to normal and it was all in my head because the other tests had come back normal. I'll start taking the supplements after I've seen the endo because I don't want to thwart my results. Desperately need meds! Lol

[Josiesmum in reply to Bushbaby83]

Sorry, AIP stands for Autoimmune protocol. The link explains how it works. Best wishes.

[Bushbaby83 in reply to Josiesmum]

Thank you.

[Hillwoman in reply to Bushbaby83]

Bushbaby, I would say you have to have a lot of help, or still be in reasonable health, to do the AIP diet. I tried to do it this year, along with my husband, but the amount of time I had to spend on my feet doing the preparation and cooking caused me to collapse near the start of the diet.

I think AIP is well worth doing, but only when you're well on the road to recovery. To start with, I've found it much easier to give up grains and sugar, and do a basic paleo diet. Those measures should bring some benefits.

[Serendipitious in reply to Josiesmum]

Where are you going for the infra red sauna? I've been recommended to use one too. However as far as I know there's only one in Croydon.