A little about me, 55, female, psoriatic arthritis from a child, treated with biological Cosentxy and Methotrexate. Fatigue/weight gain led to a diagnosis of Fibromyalgia in 2018 after gallbladder removal. I was treated with high dose steroid injections. Over the next 18 months I suffered 12 posterior vitreous detachments across both eyes during which time I was diagnosed with Hypothyroidism and then Hashimotos. I suffer with pretty much every symptom, but the weight gain and inability to lose weight is a huge problem with already having arthritis. I’ve been seeing an NHS dietitian for 14 months and have gained 1kg! I’ve just been referred to bariatrics at my local hospital. It’s not my preferred route, I’d like to get my metabolism working and lose weight naturally.
I stay relatively active despite morbid obesity, but have become increasingly worried about my resting heart rate, it sits around the low 50’s, dropping as low as 40 every day. I feel heavy chested, spoke to my GP recently, he upped my Levothyroxine to 175mg and prescribed a statin.
I recommend every in the Uk obtains access to their medical records. Only by using this did I find out I’m suffering with stage 3 CKD.
Is this typical with Hashimotos/Hypothyroidism?
I’ve just arranged to see an Endocrinologist privately, he also specialises in cardiovascular disease related to diabetes so I’m hoping he might be able to help.
My recent results are as follows:
T4 14.6 (12.3-20.2) previously 15.2
TSH 4.9 (.27-4.2) previously 5.2
GP thinks these results are ok but I asked for vitamins to be tested.
Serum Folate 93
B12 399
Ferritin 164
Sodium 141 (133-146)
Potassium 3.8 (3.5-5.3)
I have regular bloods done because of my arthritis and find I always have these out of range but GP classes them as nothing to worry about.
Creatinine 96 (45-84)
eGFRcreat 57 (60-200)
C-reactive protein 8 (0-5)
Platelets 140 (150-400)
Blood pressure 128/86
So very sorry for the long post, just wondering if anyone also suffers with the same combination of conditions?
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SimbaT
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You have my sympathy! I'm similar age and have either psoriatic arthritis or ankylosing spondylitis (depending on who you talk to) and have had hypothyroidism for 20+ years. There is much good advice about thyroid medication and vitamins available on this forum so won't go too deep into that. But will say if TSH is 4.9 in that range you need to look at thyroid hormone. I know it is a difficult topic in the UK but have you asked about adding T3? When will you get new results for the latest increase of T4? I'm taking Cosentyx as well and no longer take Methotrexate. Have you considered not taking the methotrexate? It's not something I have researched but maybe research/ask. Might try taking a break from it. Is CKD kidney related or do you have CVD cardio vascular disease? I'm also gluten-free as it aggravated my psoriasis - if we had realized it was such a problem I would have gone off it at 12yrs old!
So sorry to hear you also suffer from psoriatic arthritis. I’ve tried gluten free, it didn’t help tbh but I don’t think it will whilst my inflammation markers are high.
My endocrinologist appt is next week, I’ll ask him about adding T3 - thank you for suggesting it.
I’ve no known cardiovascular problems, although I am going to get it checked out, I know this can cause problems with the kidneys.
I don’t take my methotrexate injection every week, it makes me feel so sick and being honest, I still have the inflammation, pain and psoriasis so I might just stop it altogether.
I know the biological medication works because my bloods were much worse before, although this was all pre hypothyroidism.
Isn’t life just a drag with autoimmune conditions? All we want is to live a normal life with some quality to it.
I really appreciate you reaching out to me - thank you 🙏
Hi, I don’t think I can be of much help here but it seems to me that your B12 is very low. I can’t comment on your Folate (B9) result especially as there is no reference range attached to both it and the B12 result. Apparently, labs have stopped giving upper reference ranges for folate as it is a water soluble vitamin that is excreted in urine if it’s in excess (the same goes with B12) which would make me think your B9/folate level is very high (mine were only flagged as high after getting into the 20+ range).
However, B12 and B9 are intimately associated and when one flags high or low it can be a problem. These two vitamins need each other to work properly (I think ferritin is implicated somewhere too) and folate or methylfolate is needed in much higher doses than the RDA% when supplementing (injecting) with B12.
A higher blood level reading of folate can mask a B12 deficiency. High folate could also be related to kidney issues. If the person was already taking B12 and/or folate when tested then these will show a false higher reading.
I gleaned all of my information from the Facebook groups Vitamin B12 Wake Up, Pernicious Anaemia/B12 Deficiency- Support Group and Vitamin B12 Deficiency. They were all a huge help.
I have psoriatic arthritis on Cosentyx and Otezla as well as Thyroidless and it looks like your arthritis labs are not complete especially since your on biologic and Methotrexate …. Does your Rheumatologist order your bloodwork?
I have a FBC bimonthly. Everything else was in range so I didn’t list them. My GP is very good on ensuring I have bloods done but then does nothing with them 🤣🤣
So sorry to hear you’re also a PSA sufferer. It’s difficult having a number of autoimmune conditions that all cause fatigue 😞
Well if your doctor is very good with bloods and does nothing with them Im going to say he isn’t very good …. You have elevated kidney levels and he should be curious as to why they are elevated… I personally wouldn’t take Methotrexate but I realize that is a pretty standard treatment for PSA … but hey at least your on Cosentyx thats good …. Have you asked to be taken off methotrexate and put on Otezla ?
Thank you for taking the time to reply. I meant the GP will withhold my meds until I get my bloods done, essentially forcing my hand if I’m busy and forget. Sorry for the confusion
My rheumatologist prescribed the methotrexate alongside the Cosentyx after Humira stopped working for me. The Cosentyx alone wasn’t enough. I haven’t heard of Otezla - is it for Psoriasis or arthritis? I’ve got a dermatologist appt soon.
Thank you for suggesting Otezla. I’ve just had a google, I’m definitely going to request to switch from methotrexate to this. This forum is so useful - thank you 🙏
Orezla is for both PSA and Psoriasis although for me it never worked by itself but with Cosentyx it was a game changer….. Never Ever Stop Cosentyx without proper weaning or you could end in a PSA that is a monster…. This is why Im on both Cosentyx and Otezla PRIOR I was on Stelara doctors made me stop injections before my thyroidectomy and all hell broke out I was almost crippled with a PSA flare that I did not have issues with…. I started biologics for psoriasis originally now Im pretty doomed with pain.
It’s so encouraging to hear how effectively this combination works for you. I’ll keep my fingers crossed.
Poor you with the PSA flare 😞 I remember this so well before my biological journey began, so inflamed and in excruciating pain, we were selling our house to buy a bungalow because my mobility was so poor, we genuinely believed I would end up in a wheelchair at 33. I never returned to work after having my second son. Thank goodness for the biological medication 🙏
Can I ask why you had the thyroidectomy? Do you also have Hashimotos?
There is a known connection between hypothyroidism and CKD.
Hypo predisposes you to CKD. I'm sure I've read posts on here of people reversing their CKD or at least improving it.
My immediate thoughts are to drop the statin. Theres no indication that they're helpful for women. greygoose knows about statins. She might be along now I've tagged her.
You also need a dose increase. Your frees are likely too low in range for you since you're still symptomatic. I'd increase levo to get up into the top quarter of the range before considering introducing T3.
Thank you for your advice,y GP was so reluctant to increase my dose from 150 to 175, telling me I was already on an extremely high dose. He finally agreed only because of my low heart rate. This was a GP registrar, pie surgery seems to have a number who do training at the practise and you never see or hear from them again. I’ve read there’s a definite link between Hypo and CKD and also bradycardia is a symptom of Hypothyroidism and then the slow heart rate subsequently affects the kidneys. I’ve got my first private endocrinologist on Tuesday, I’m making notes!
The statin was prescribed because of the risk of developing cardiovascular problems and my BMI, I eat a very clean diet, with very limited alcohol and cook every meal fresh. I’ve never had a problem with cholesterol and thankfully not diabetes either.
Statins are marketed as a wonder drug that everyone should take, thanks for making me aware of this too.
I’ve been seeing an NHS dietitian for 14 months and have gained 1kg!
Ah, yes! Been there, done that... My doctor once put me on a liquid diet that I had to buy at the pharmachy. Did it religiously for three weeks, cleaning my teeth every couple of hours because teeth are meant for chewing! At the end of three weeks I'd gained 3 kilos! Doctor accused me of cheating because there was no way - according to her - that I could not lose weight on that diet! Just goes to show that weight gain isn't always to do with what you eat.
But, you are terribly under-medicated to have a TSH over 4. So, pretty certain that your FT3 is very low. And that's what causes high cholesterol. It's not due to statin deficiency! Your doctor knows nothing about thyroid.
It's mentioned somewhere in an NHS document that thyroid should be tested before prescribing statins. And that if hypo, statins should not be prescribed. It can cause muscle problems. Obviously, your doctor doesn't read NHS documents. And he's not even tested your FT3. But I'm will ing bet that's the problem.
Taking statins can cause more problems than it solves - in fact, it doesn't solve any problems because artificially lowering cholesterol with statins doesn't get to the root of the problem. And it means you will be stuck on them for life because when you stop them, the cholesterol will just creep up again.
So, you're putting yourself at risk of developing diabetes, and lowering your sex hormones putting you at greater risk of breast cancer. What's more, as the body is pretty much made of cholesterol - cell walls, brain, sex hormones... - it will not be able to repair itself and regenerate with lowered cholesterol levels. Which is why statins put you at greater risk of a heart attack than the high cholesterol does.
In fact, high cholesterol does not cause heart attacks or strokes. Yes, it is found in the arteries of people who have heart attacks, but it is there to repair the damage done by inflammation. Remove the cholesterol and you'll die of the damage, anyway. And cholesterol doesn't build up or stay in the arteries because once the damage is healed, the cholesterol is absorbed into the cell walls. Cholesterol is not your enemy, it is your friend.
And it has little to do with diet. It is made in the liver, and the more you ingest with your food, the less the liver makes, and vice versa. Problem is, when T3 is low, it tends to build up in the arteries because the body can no-longer process cholesterol correctly. And Big Pharma saw this as a money-making opertunity and invented statins. By taking them, all you are doing is making BP rich whilst putting your own life in danger.
What you need is a decent dose of levo to raise your FT4, and reduce your TSH. Then a test of both FT4 and FT3 at the same time to see how well you convert. But, I wouldn't expect a GP to know any of that. Not only do they see cholesterol as they enemy, they also see T3. They have no idea what either of them do, nor how necessary they are.
Oh, and BTW, your cholesterol level is in no way responsible for any of your symptoms. That is the low T3.
Greygoose 🙏 I cannot thank you enough for your lengthy reply. You’re so well informed and experienced and I can finally understand what is happening with my FT4 and TSH.
I despair whenever I need to contact my GP, they really need to be better informed and really have no idea how debilitating being hypo is and the complications that arise from it being poorly managed. Being judged for being heavier is so upsetting, they assume you’re lazy and live on takeaways! I wish! I work so hard to merely maintain my weight, it’s hard work to not keep gaining but I’m optimistic that when I’m properly medicated I can start to move the pounds.
I feel empowered for my appointment next week and I look forward to updating my post with good news.
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