Severe aches amongst a long list of ongoing issues.

[Pamm73]

Hi everyone

Everyone has been really helpful in past and I wanted some advice.

It was Jan 16 I was diagnosed Hypo after years of on off symptoms that got a lot worse leading up to diagnosis.

The last few months I've had a few issues, I've developed a really high under stress heart rate that I went private for to rule out anything serious due to a weekend of chest & back/shoulder pain that took me to hospital. Thankfully the investigations cane back clear, I get head pain intermittently on the left side of my skull, above and slightly behind my ear but more recently I'm experiencing really bad Hip & knee pain.

I was at my GP last week as I had swollen nodes in my groin which the new junior doctor expressed concern about the size and depth of the nodes however the same old head unhelpful doctor shot her down and told her they were normal, along with the nodes i developed 2 purple spots about the size of a 50p at the side of the swelling which resembles a burn but within 48 hours they turned yellow and tracked up my leg and hip.The yellow is still visible after 7 days from the initial red/purple marks.

The doctor who double checked this sent me away.

I had some antibiotics at home which were unused so I'm taking them as we speak to rule out some infection I may have although no change as yet.

I really feel the list of issues is getting longer and I'm getting nowhere...

I know a lot of you have had issues and wondered if any I have mirror yours???

I'm back at nurse later this week for a pre arranged appt made 4 weeks ago for bloods

I dont have bloods to hand but im sure my My Jan bloods were TSH 10.55, t4 12.4 (10 - 25)

Feb TSH 1.89 I asked for t3 but they didn't do it

March 16 tsh 3.89, I again asked for t3, they didn't do it.

My hip and knee pain is becoming unbearable, I tossed and turned all night last night because of this pain & any advice that stops them looking at me as a hypochondriac is greatly appreciated.

Thank u again for your help.x

[Jazzw]

How much levo are you taking Pamm73? It's sounding like you're still undermedicated.

[Pamm73 in reply to Jazzw]

I'm in 50mg and my GP said while bloods stay the same they won't increase my medication...

[Clutter in reply to Pamm73]

Pamm73,

Most people need TSH around 1.0 or lower with FT4 in the upper range to feel well. Show your GP Dr. Toft's interview with Pulse Magazine when you ask for a dose increase. You can get a copy from [e-mail] and there is an extract you can read in Treatment Options in thyroiduk.org.uk/tuk/about_...

If your GP still refuses to increase dose I would change GP.

I would also ask your GP to check ferritin, vitamin D, B12 and folate which present with musculoskeletal pain, fatigue and low mood when low/deficient and are similar to hypothyroid symptoms. I had considerable hip and knee joint pain when I was vitD deficient and the pain resolved completely when deficiency was corrected.

[Pamm73 in reply to Clutter]

Thank u Clutter

I really appreciate this, I will read and print it out.

It's just a minefield, I'm so shocked at the lack of interest from my practice, I've gone from being a twice a day training athlete and now I can hardly get off the sofa... I'm walking like I've just been hit by a bulldozer!! Lol

I will try to speak to gp before I see nurse and hopefully they'll test everything else. X

[Jazzw in reply to Pamm73]

Your GP is an idiot. You're on a starter dose of levo - you need a raise. You're feeling ill because the dose you're on has switched off what remaining thyroid function you had left so you now have less thyroid hormone than you had to start with.

Is there another GP in the practice you can see?

[Pamm73 in reply to Jazzw]

Yes, I have made an appt to see her. Although I have already seen 2 gp's and neither have been any help.

Thank u X

[Hidden in reply to Jazzw]

Perfectly stated.

[Pamm73 in reply to Jazzw]

Thank you Jazzw, it's probably staring me in face but so frustrating when your hit with such resistance from GP.

So many people see to have sane issue.

It's disgusting!! X

[MaryF]

Apart from the obvious thyroid tests, plus vitamin D, B12 and iron, you need to be tested for Lupus to rule it out, you need an ANA test done: nhs.uk/Conditions/Lupus/Pag... Also do you have any history of severe migraines or anything? MaryF

[Pamm73 in reply to MaryF]

Thank u maryF I really appreciate your help.

I will try however I really won't hold my breath for them doing any other tests, I really feel it's all structured, they follow useless guidelines that don't treat individual patient needs but budgets/targets set for the practice to stay within..

Re migranes, never, I've only developed headaches, behind eyes and last few months on left of my head in last few months.

Thank u x

[MaryF in reply to Pamm73]

It is your right to have more tests and also be referred to a rheumatologist if you are not well, another thing to look for is Sjogrens Disease, sometimes the first hint is very dry gritty eyes. Best of luck. MaryF

[misslissa in reply to MaryF]

Do you mind me asking why you are asking about migraines please?

[MaryF in reply to misslissa]

As there is a condition, which I suffer from, Hughes Syndrome/APS which often has a thyroid condition alongside it, and migraines are a typical feature: hughes-syndrome.org/about-h...

MaryF

[SlowDragon Administrator]

Do you know if you have Hashimoto's (auto-immune thyroid )

Have you had your antibodies checked? I couldn't see any mention in your previous posts.

Both TPO and TG antibodies need checking (NHS rarely does both) if one or both are above range then this means your thyroid is caused by immune issue.

If you can not get this checked by GP Thyroud Uk have info on where to get private tests

thyroiduk.org.uk/tuk/testin...

Many of us find adopting a 100% gluten free diet calms the immune response

I notice in previous listing you mention having IBS. Perhaps that could actually be gluten intolerance or coeliacs. Before trying gluten free it's a good idea to see if your GP will do coeliacs/gluten blood test, if not been done already. Though don't assume if the result is negative that you don't. (Can get false negative)

The only way to know for sure is to try it.

these days there are a lot of good GF foods, and even eating out is not too daunting.

[Pamm73 in reply to SlowDragon]

Hi SlowDragon

Thank you for your reply, I appreciate it.

As far as I'm aware I've not been tested for Hashimotos however I have about 18 months worth of blood results at home so I'll look when I get home.

I've already been tested for coeliac and related tests which all came back negative.

I think I was only diagnosed ibs coz they didn't know what else was wrong.

I think I'll contact the blood testing link you posted and get a few things tested

Thank u x

[Howard39]

Hi sorry about all the hassle you are having. It is sadly true that there will be so many people in the same situation battling to get help and the correct medication. I spoke to my specialist yesterday who has 6000 patients and she said each week more and more people are not getting medication and support from their GP's.

IBS is just a name for a group of symptoms- you are right they just guess. But you can have a stool analysis test to ensure you are absorbing your food. It will determine if you have low stomach acid, low good or high bacteria in your gut. You can take all the supplements and meds in the world but if this is off balance you just do not absorb them.

From memory (private sorry ) the cost is circa £200 Geneva do it. But on a plus side its very easy to put it right and they tell you which antibiotics you can take for your body. If you need more info let me know.

Moving on have you have a Free T3 test done? Everyone is right please consider changing doctors if only to have a fresh start. Basic medical care is essential. Gluten free is the way to go with low GI food loads you will feel better regardless of the test result. Mine was neg on NHS and positive privately but the outcome is the same so save your money.

Yes you need to have the full bloods done with your vitamins to look for any issues. Clutter is right vitamin D deficiency does affect so many things.

Its a guess but I would say you are very run down possibly due to low thyroid issues and maybe absorption complications. Most people have problems- many of my friends have sinus issues and one had swollen glands like you but are better now. Most of us have to self medicate on some level to ensure optimum health.

I wish you all the very best. Please remember you are not alone. It feels like it at times but I take comfort from the help I have received on here. x

[teenarocks]

Pam, I vigorously encourage you to look for a better doctor. A doctor who ignores swollen lymph nodes in the groin accompanied by bruising and joint pain should have their license revoked. Please get this checked out by a different clinic. These are not typical thyroid symptoms.

[SlowDragon Administrator]

If you look on thyroid UK

I personally use the thyroid plus eleven test from Blue Horizon - this includes checking B12, Vit D, folate and ferratin.

I could not have made progress without all the help and expertise available on here.

If you read my profile you will see I should have definitely ignored the negative result I had for my gluten test 20 years ago .......and just tried going GF myself. Would have saved a whole heap of heartbreak.