No diagnosis - treating symptoms only help please

[josiebloggs]

After my latest test results I've accepted that my symptoms will be treated but not my thyroid. To be fair to my gp, she did all the tests including anti bodies and T3 and they show nothing that indicates a thyroid problem. I'm convinced there is one but I'll just have to be further down the line before it shows up on blood work. Can anyone help with any of the following?

GERD - I've been taking omaprezole for over 3 years. I'm pretty sure now that this isn't good and could be causing it's own problems so I'll try to come off it. I'll need to regulate my stomach acid in some way - any ideas?

PAIN - I finished chemo 4 years ago and was left with peripheral neuropathy. I take amitryptaline which I'm going to continue. I may be able to reduce it at some point.

Vitamin/Mineral levels - I'll get these retested in October, 6 months after stopping all my supplements.

Asthma and Eczema - I'll continue with medications for these.

Dry eyes - I have hylo-forte drops prescribed

Hip/back pain and tendonitis - I finally have an appointment for physio

Fatigue - Gp has referred me for 'Lifestyle Management'! I guess she thinks my attitude needs adjusting

High Cholesterol - With a level of 12.7 statins are being pushed. I'm resisting!

Dizziness - nothing can help apparently.

Tinnitus - no help here either

Missing outer eyebrows - nor here

High blood pressure - medicated and under control

Swollen thyroid on one side - not important apparently

Weight gain - eat less move more

Constipation - medication offered

I suspect hashimotos but have no idea where to start with diet and lifestyle changes to help. All pointers gratefully received, thanks

(In case it's relevant I'm post menopausal, post cancer treatment - 4 years and sick of being told this is all normal)

EDITED TO ADD - Test results April 2018 - TSH 1.3(0.2-4.5) FT4 13(9-21) B12 755(180-2000) Folate 16.8(2.8-20) Vit D 92(25-162)

Test results July 2018 - Total T3 1.5(0.9-2.4) FT3 3.4(2.5-4.9) Anti Thyroid Peroxidase 41.8(0-100)

[Judithdalston]

I can only see vit D test at 90 something I think( sorry - that's the problem with not having test results on the post, and having to look at earlier one)...but what about folate, ferritin and B12 tests and results? Low vit/ mins could be causing problems, but you say you've given up all supplements, why?

[josiebloggs in reply to Judithdalston]

Hi, sorry, it was a long post and I didn't want to make it longer! I gave up the supplements because they might be masking problems. Once I had the cholesterol results and started looking at what the issue might be I ended up here and considering thyroid. None of the tests that I've managed to get done show any obvious issues but there's clearly something very wrong.

[ShinyB]

I have read that it is possible to have 'normal' thyroid hormone levels in your blood, but for the thyroid hormones to not be reaching the cells where it does its work. It's not much use if it's hanging around in your blood but not getting into the cells!

I'm a bit brain fogged today to think straight, but perhaps try ordering this book by Dr Mark Starr - Hypothyroidism Type 2, The Epidemic: amazon.co.uk/Hypothyroidism.... You can get the kindle edition for just over £7.

I'd be inclined to read up on it, and then perhaps try a trial of Natural Desiccated Thyroid and see if that gives you an improvement in your symptoms.

I wish you the best of luck. If it's any consolation, I had a private test done that showed I had under the range fT3 but the doc still wouldn't give me a diagnosis!

[josiebloggs in reply to ShinyB]

Thank you, I think I'm starting to realise that it's up to me to find what works for me. Sorry your non treatment is frustrating you too!

[ShinyB in reply to josiebloggs]

It'd still be nice if the medics gave us a bit of help though, eh?! Sigh.

I read a good book that was a real eye opener for me - It's called 'Hypothyroidism, the Unsuspected Illness' by Dr Broda Barnes. It was written in the 1970s. It's written in a very accessible style (unlike some of the heavy books I've tried to read!) - but he talks a lot about trialling people on NDT. He also advocates checking what your basal temperature is - so first thing in the morning, before you even stir, take your temperature for a good ten minutes. If it's consistently under 36.5 he says that can be indicative of a hypothyroid state.

I'm self medicating now. It feels like I'm in a maze or a rabbit warren! But I am seeing some improvements.

[greygoose]

Would help if you posted all your results here, to let people have a look. It doesn't matter how long your post is, there's no restriction on the number of words, just as long as we get all the facts. And results and ranges are the most important facts.

[josiebloggs in reply to greygoose]

Hi grey goose, I've edited my post now to add the test results, thanks

[greygoose in reply to josiebloggs]

Well, your FT4 was a bit low in April. But, as they didn't do the FT3 at the same time, that doesn't mean very much. Doctors mainly go on TSH. And yours was euthyroid. But, don't give up on it. Keep testing. Maybe, if you can, a private test would be a good idea. Then you can get all the necessary tests in one go, instead of in dribs and drabs, give you a more complete picture.

[josiebloggs in reply to greygoose]

Thank you. Yes, I'm going to order the full range either 6 months after stopping all supplements or next time I get what feels like an 'attack'. Sounds dramatic but at the time I thought I'd had a sudden bout of fibromyalgia I felt so grim! Couldn't move for about 3 days and took over a week to get out of the house. It's like a puzzle isn't it?

[greygoose in reply to josiebloggs]

Yes, good idea.

[Josiesmum]

Could be low cortisol. Ask your GP for blood test which must be done at 9am. Also did they test ferritin? Ask for iron panel at the same time. You might be low in iodine but GPs don't normally test for this.

Sounds like you have an overactive immune system, so would be worth trying the Paleo Autoimmune Diet to give your body a break from food reactions, gluten and dairy being the most common irritants: thepaleomom.com/start-here/...

[josiebloggs in reply to Josiesmum]

Thanks josiesmum. I'm already gluten free but might have to go dairy free too. I'll see where I am after a full range of blood tests in a couple of months.

[Cooper27]

Izabella Wentz has some old info on Hashimotos. Many have benefitted from her "root cause" book, I thought the "Hashimotos protocol" was quite helpful - it's a 12 week plan you can follow to improve Hashimotos symptoms.

[josiebloggs in reply to Cooper27]

Thank you, I'll look that out.

[Highland49]

Hi,

It's good that you've come off the supplements as taking anything with b12 in will show a false higher result. There are better tests available for b12, including the MMA urine test and active b12. You will probably have to go private for these.

If you have a private full thyroid panel, this will include the FT3 as mentioned by greygoose, plus selenium, b12, zinc, vitamin D, folate, ferritin and magnesium. I used Blue Horizon and Medichecks are also very good. The antibodies will then be checked again.

Low b12 can cause high cholesterol and definitely a good idea to avoid those statins. Taking PPIs such as omeprazole has been proven to affect b12 levels as they reduce the stomach acid, therefore affecting absorption of vitamins. A more natural alternative would be apple cider vinegar with honey before meals. Cooper27 has mentioned Izabella Wentz, she has lots of information on promoting a healthy gut with the use of digestive enzymes containing betaine HCL. She advocates going gluten free.

Would you say that your dizziness includes balance problems? This could be thyroid or b12 related. If b12 related, balance problems are a neurological symptom and should be treated by alternate day injections until no further improvement. Have they referred you to ENT in the past?

It seems that the medical profession are good at treating individual symptoms as you say but don't join the dots to realise what could be causing so many of your symptoms. Good luck and I hope you get to the bottom of all this.

[josiebloggs in reply to Highland49]

Thank you for your very detailed reply, I really do appreciate everyone's help. The dizziness is a recent thing - it's mostly a woozy feeling till I lie down or bend over then it's definitely dizziness! I've had a couple of bouts of labyrinthitis which were awful and lasted about 4 weeks each (in the last year) and this woozy/dizziness is what I'm left with. It's really frustrating because as time progresses I seem to get more 'little' things that are adding up to a bit of a rubbish quality of life. I think my plan now is to go right back to the beginning - wait for the supplements to get completely out of my system, get a full range of blood tests including thyroid and go from there. Thanks again.

[Highland49 in reply to josiebloggs]

I found I was exactly the same, I'd turn over in bed and really notice it or out walking the dog was really bad. Anything that involved moving my head! Someone on another health forum likened it to a swimming head sensation just like you've come off a roundabout. Definitely a good way to describe it. For me, I now know that it's low vitamin B12 and controlled by alternate day injections. If I'm particularly tired or stressed, I still need to top up with a sublingual hydroxo b12 tablet.

Poor you with the labyrinthitis, I had one bout in my twenties, never want that again.

Good luck with your blood tests.