Don't think GP practice is treating my condition properly. What can I do about it?

[MollyMoo53]

I was diagnosed Hypo in January 2015. Put on Levo 50. At the time I could barely walk as my legs/knees were so painful, I was constantly unwell and fatigued beyond just tiredness. I had been deteriorating alarmingly and significantly for about 2-3 yrs previous to the Thyroid diagnosis. Quick past history includes father died young (55) due to Wegeners Granularmatosis, Mother also died young due to COPD (she had thyroid issue just prior to death at age 55).

I started having sight problems in 1998 -diagnosed as Uveitis. Still active and treated for this condition which is now bilateral and complex. I have had bowel issues for a very long time - tentatively told by GP that I probably had IBS many years ago.

Fast forward to now - 2018. I had to give up work altogether in January 2017 as I was just getting sicker and sicker and , working 7 day a week sometimes 14/16 hours a day. Employers really engineered my leaving. I had to retire medically aged 55.

Throughout 2017 I felt very unwell and absolutely beyond tired. Depression has been a factor lately along with the most alarming panic attacks. I put that down to having to stop work and worrying about the financial future.

My eye consultant sent me for rheumatology appointment at hospital in May 2017 because my mobility was worsening and legs so painful that I could not get about. He also planned to put me on a programme of biological agents (Interferon) to try to halt my sight loss so needed Rheum workup before that course cold be taken. Rheumatologist was thorough. He said I had arthritis but not rheumatoid arthritis. Of most note however was the fact that he had looked at my medical history in some detail along with test results. He sent me a copy of the letter he sent to the GP in July 2017 where he stated that a blood test I had in September 2016 had shown very low B12 and similarly low Vit D- which required urgent treatment. I had the 2 week B12 injections and put on vit d tablets, high dose for 2 weeks then a low dose thereafter. Also on Folic acid 5mg dail.

July 9th I ended up in casualty with an increased heart rate of 210 for 9 hours. Resolved with injection of special medication that brings heart rate down. Inpatient in Cardiac unit being monitored for 4 days. Discharged with statins. Cholesterol was high. Thought to be an electrical issue rather than heart block etc. No follow up.

*At point of thyroid diagnosis in 2015 GP told me that my heart had become enlarged since a previous x ray two years earlier. He referred me to cardiac dept but they refused to see me.

November 2017 had blood tests at GP surgery. Had to wait a whole month for a phone consult to get results of test. Result of Thyroid was poor. GP increased my Levo to 75 that night. I asked for B12 and Vit D to be tested at same time. They were not.

In the meantime my statins were the cause of a hugely swollen tongue and I asked for my dose to be reduced- it was halved. GP suggested a second blood test which I had done on 7/12. Conversation with GP on 11/12 Thyroid and multiple other readings were off. I asked her what they tested for Thyroid, she said only TSH. I asked for Free T3 and Free T4 to be tested. She said hey were not allowed to test these! Not unless an Endo agreed them!! I am not under an Endo but perhaps I should be ?

Bloods done again 12/12. No phone consult available for results until 29/12. I missed that call as it came hours later than planned.

repeated bloods again on 24/1/18 after Levo increased dose for a month. Phone consult results on 31/1/18. No B12 or Vit D tested. Last 2 tests Monocytes albumen, Protein, Kidney function,CRP, Thyroid all off on both tests.

TSH now 6.3 so increased Levo to 100 from tomorrow.

Everything I read leads me to Hashimotos. I seem to be a likely candidate given history and presenting factors. To get a correct diagnosis and correct treatment surely my Free T3 and T4 levels need measuring? If GP is refusing to test these how the hell do I get them tested?

I don't go out for days/weeks on end as I can't cope with walking a short distance before getting into problems. I have severe asthma, COPD and severe OSA all diagnosed last year. Attached to a CPAP at night as an absolute necessity. I have put on about 3 stone in 2 years. I have constant tinnutus now and it drives me mad!

Also recently diagnosed with Veinous insufficiency in my legs with lipodermal sclerosis - seeing consultant tomorrow for action plan (If any). He doesn't quite believe that I am not just a fat, lazy bloater - negating my attempt to explain my meteoric weight gain. So I fully expect him to tell me that being fat causes the problem and shuffle off and lose 10 stone!

I feel like I am finished at 55 (same age as both parents died)

Molly

sorry its so long. I couldn't stop once started.

[Dreamer12]

Hi MollyMoo53

So sorry to hear about your health just now and also about your parents passing away so young. I am fairly new to all of this, but like you I had many of the symptoms that you are describing and after taking thyroid medication for the last year and getting the vitamins in order and going gluten free I feel like a different person. You expect the GP to understand but sadly so many of them appear to not know much about thyroid conditions and have the draconian guidelines that they use. Could you call your GP tomorrow and ask for the results of your last thyroid tests and post them here and people will be able to help you. Take good care Jane xxx

[Saggyuk]

Oh gosh

You really must get your B12, iron, Vit D and folate checked. I imagine you're awfully and dangerously deficient having had a look through your posts.

They should have worked out why you were B12 deficient at the time- two weeks worth of injections were unlikely to be anywhere near enough to even have pulled you out of deficiency in the first place and it is dangerous to take folic acid if your B12 has not been resolved. You should have been tested for pernicious anaemia and if this was negative and you have stomach problems, you should have been referred to a gastroenterologist to investigate your stomach and figure out why you are not absorbing your vits.

This is all clearly stated in the NICE guidelines they are supposed to follow when a patient presents with Vit B12 deficiency:

cks.nice.org.uk/anaemia-b12...

In regards to thyroid, you will have to wait six weeks to see where the increase in dose gets you and then retest.

I can see you've got chronic diarrhea and bowel issues, vitamin deficiencies, immune issues etc. You should also ask to be tested for coeliacs as something like this could be the root of many of your problems also. Even Uveitis is an associated condition of coeliacs disease or mlnutrition. The testing for coeliacs is unreliable in some cases though so even if they come back negative and doctors won't pursue it further, you should give a GF diet a go anyway but needs to be for at least three months duration to see if you start to see any improvements and must eradicate every crumb including cross contamination. There are other inflammatory blowel conditions which could also be possible but coeliacs is a good place to start as is often missed.

I would think very carefully about taking the statins - they often do more harm than good and unlikely to help your issues but I am not medically trained.

You mentioned your heart was thought to be electrical issues - I'm assuming your electrolytes were off in the kidney function tests - did they say what they doing about these results or even test your calcium? This can cause heart issues and there might be problems there especially if Vit D has been deficient for a very long time. WHy on earth did the cardiac department refuse to see you?

You have multiple issues which are difficult and could be complicated to resolve and have inflammatory issues throughout your whole body almost but the best thing to do is sort the basics first and the see what you're left with. You must get your vits tested again and sorted as I expect you're severely deficient in many things looking at some of your symptoms. You should be referred to get your stomach sorted as clearly preceded much of the rest.

It's hard for anyone to suggest anything without results so get copies of the tests you said were all off recently and post them on here and maybe something will pop up. You can get your doctors receptionist to print them off for you - it is illegal for them to refuse you these.

You can pay for the tests yourself privately if necessary. The test most use is one which includes the complete thyroid panel including T3 and antibodies and Vit D, VIt B12, folate, ferritin and crp. Medichecks often do them reduced for £79 on a thursday so well worth a check tomorrow. Let me know if you want a link.

I really feel for you, I expect you've been very let down by the professionals who have clearly left far too many things for far to long.

I do hope you start to get to the bottom of it soon xxxx

[Saggyuk in reply to Saggyuk]

In fact actually, just thinking about it a few minutes longer, if you have any problems with electrolytes and thats why your kidney function tests came back wrong, statins are the last thing you need as can make it worse and mess up your electrolytes even more? In fact they can cause this and kidney issues in the first place!

[Saggyuk in reply to Saggyuk]

I just had a quick check and see the link below which actually warns:

"In rare cases, atorvastatin can cause a condition that results in the breakdown of skeletal muscle tissue, leading to kidney failure. This condition may be more likely to occur in older adults and in people who have kidney disease or poorly controlled hypothyroidism (underactive thyroid)."

It also warns that you may need to come off them if you have electrolyte imbalance.

cardiosmart.org/Healthwise/...

So yes, you should never have been prescribed them in my opinion!!! You may on a slightly different one to atorvastatin but I imagine they all say similar things? Just seen a similar warning for simvastatin

[whispers60 in reply to Saggyuk]

When I was on statins they caused bad leg pain and hip pain and hindered my mobility so perhaps they are also making this worse too I knew it was them as not had it before and the pains went within days of stopping

[silverfox7]

I saw a headline the other week stating too many have been wrongly given statins. I don't know anymore but if anyone can give us the facts that was based on then that may help to sort out some of the problems.

[Fruitandnutcase]

I took statins for about two weeks. After that time I was feeling so I’ll, just terrible, my leg muscles had become so tired I could barely walk, my other half wanted to walk from where we were staying into town - about a half hour walk - and I just couldn’t do it. I couldn’t move my legs and I felt so depressed I just wanted to curl up in a corner and do nothing. Other half said to stop them but I felt the doctor had prescribed them and I couldn’t so other half said reduce the dose which I did but by the time we got home I had stopped the statins completely.

I did research and decided it wasn’t worth it. I told my doctor I didn’t want to take them, was offered a ‘better quality’ one - I had simvastatin - but I declined. The doc I saw suggested using those cholesterol cutt8ng spreads and drinks, I tried them for a while then gave up and went back to butter.

You have an awful lot on your plate, many of them being inflammatory conditions so have you thought about going totally gluten free? I did that a few years ago when I was diagnosed with inflammatory arthritis- that an autoimmune condition too far - so I decided to go GF as an experiment to see if it would reduce my thyroid antibodies - I’ve got Graves Disease which is hyper with antibodies - I was only going to try it for a few months but it worked so well I’ve been GF ever since.

Last year my rheumatologist suggested testing for Coeliac but it would have meant eating gluten for a while before the test and I didn’t want to do that so if you want to be tested to see if you have gluten issues do that before you go GF. If like me youre not bothered about a definite diagnosis for Coeliac then give it a try. I joined Coeliac U.K. and got their brilliant dictionary of gluten free foods as well as web access and a magazine.

Like the others have said you want your B12 and vitamin D to be well up in their ranges. I use a Better You vitamin D spray every day and take B12 sublingual vitamin B12 lozenges when I need to, also take CoQ10 from time to time.

Good luck with fixing your health issues, you’re in the right place here for good advice though.

[UHelga]

I am so sorry to hear of all your challenges and I can totally relate to your experiences! I was on an odyssey with my underactive thyroid/ Hashimoto for years, which gave me frequent heart probs like the ones you describe and which always turned out to be hyper swings. Although that was only once suggested by an A&E doctor. Like you I have Asthma, got diagnosed with Copd last year, been on statins and I lost my mum in her early 50s.

I agree with everything that’s been suggested already, and I would start with a private blood test ASAP so you get the full picture and everyone here will help you with your next steps.

From my personal experience I would say that docs know very little about both the thyroid and COPD and you may have to take things into your own hands. I did stop the statins (had tried several) as they made me so much worse overall. I found that once I went gluten free, (am now also almost dairy free), dealt with various food intolerances, my cholesterol normalized naturally. Being on the right thyroids meds is vital. And a good diet and addressing Vitamin deficiencies is important for CoPd too but at least a detailed blood test should point you in the right direction. All the best MollyMoo53 x

[klr31]

Your cholesterol could be high due to being on insufficient thyroid medication. You could pay to have T4 and T3 checked. A lot of your symptoms could be due to not being on enough thyroxine, as well as untreated D and B12.

Karen

[klr31]

Have you had your antibodies checked?

Try going gluten free to help IBS.

Karen

[MariLiz]

It sounds as though you were left on a starting dose of thyroxine for too long. Usually the thyroid is rechecked every six weeks or so, and the medication increased in 25mg stages, until your TSH is reduced to around 1 or lower. Can you get copies of your blood test results from when you were first diagnosed? You can then post them on here for more advice.

Certainly low B12 and VitD along with your thyroid issues will make you feel very unwell. Are you getting any treatment for these?

My stomach issues settled down after my B12 was treated. I’m not saying things are perfect now, but an 80% improvement to how things used to be.

I really hope you can get the treatment you need and that you will begin to feel better. I understand totally how very ill you can feel, I felt I was dying. My asthma meant I could hardly breathe, and my leg muscles wouldn’t carry me far at all.

[UHelga]

Glad you mentioned NAC and vitamin C for COPD @londinium. They really help me, as does the enzyme Serrapeptase. This winter I have also noticed the difference it makes when you take the right vitamin D and B12 - I usually have to increase my levothyroxine during the winter months, but not this time!

Ps. @mollymoo53 Medichecks seem to have an offer on today for the thyroid test plus vitamins

[UHelga]

Hi Londinium

Thank you.

This is the NAC I use :

nutriadvanced.co.uk/n-acety...

The Vit C is in the form of Ascorbic Acid (Pure Vitamin C) powder, which was recommended by our Naturopath:

uk.iherb.com/pr/NutriBiotic...

Have you tried Serrapeptase? Apparently it's good for autoimmune disease but also for lungs.... and I find it helps with joint paint which is always a bonus!

I'm just waiting for my delivery of DR Best Serrapeptase (120000 units) from Amazon...

Ute

[UHelga]

Yes I wonder if it might be worth trying a different brand just in case they are made differently or affect you differently? I started with Natures' Aid 80000 building up to 3x a day but wasn't sure if that actually did anything, then moved on to a different 250000 brand which I'm sure helped me ward off the worst of a flare up in December as I didn't have to take any antibiotics! Dr Best is recommended in one of my Facebook COPD groups and probably more suitable as a lower maintenance dose.