Hypothyroidism - under medicated?

[Pat74]

Hi, this is my first time posting so sorry for the long post.

I was diagnosed as having hypothyroidism 3 years ago and I was placed on 50mg of Levothyroxine which I have been on ever since. Since then I have felt increasing worst. The joint pain and weight gain (3st since starting this medication and 2st and symptomatic 5years prior to being diagnosed) have continued to be major problems for me. I did have blood tests to check dosage on various occasions but I have always been told by various GPs and Endos that my results are normal and I am on the correct dose despite my continued symptoms. I hadn't found this website then and trusted what they said so this has been going on for a while!!

Symptoms - significant weight gain, severe joint pain, edema in right calf, intolerance to cold, memory issues, heavy sweating, tiredness, sore throat, pins and needles, low body temperature, low blood pressure etc. I have also been recently diagnosed as having PCOS and told to diet and exercise.

I do not have Hashimoto's nor do I have the DIO2 gene as confirmed by testing. My head MRI, throat ultrasound and heart tests were all clear. I am gluten free due to food intolerances and find my IBS stomach symptoms have improved with this despite being negative for Coeliac. I have a good well balanced diet and exercise despite this being painful due to the joint pain but no matter what I do I cannot lose weight, in fact it just continues to go up, usually in rapid short bursts. I even tried Orlistat (anti obesity drug) for 4 months and lost no weight so they won't re-prescribe.

I've seen several GPs (and changed surgery) but they all just tell me I'm fine and ignore my complaints or tell me I'm depressed and the symptoms are in my head! My current GP is now questioning whether I should have been diagnosed with hypothyroidism in the first place. She mentioned my original tsh level (I don't know what it was) but didn't expand further. She is thinking of taking me off my medication altogether but has no intention to investigate and give me an answer as to why I have so many symptoms then - I'm panicking now!

I have long suspected I am just not suited to levothyroxine (tried all 4 brands) and I have asked many times to try something else but have been told no. I even tried coming off Levothyroxine earlier this year but after two weeks I felt so awful I had to go back on it as I could barely move the joint pain was so severe.

I have now paid to have a private Endo appt with a thyroid and weight management specialist to try and improve my health as I can't go on like this. I'm waiting to have some further blood tests done and to check cortisol levels etc so fingers crossed as the only suggestion the GP gives me is to pay privately to have gastric sleeve surgery to address the weight which I really don't want to do. I had always been really skinny (7st) up until I started having symptoms 8 years ago, I'm 36 now and over 12st - I'm only 5ft!

I know people on here have much worst results than me and mine are "within range" but I'm just so fed up with the constant GP battles. From what I've read on here already I think I maybe under medicated and would appreciate other people's opinions and whether they think the same? Maybe I need to cut the GP out completely and try self medicating with NDT myself. My recent blood tests are attached. Thanks 😊

[jgelliss]

Welcome to our great forum Pat74

It sounds like you are experiencing hypo issues . 50mcg T4 is a starter dose . Your Endo/Dr will hopefully run labs with FT3 FT4 TSH and some run RT3 . Full Iron Panel /ferritin would be valuable test as well as Vitamin "D" , B-12 . Nutrients help our thyroid meds work for us better . Selenium is another great nutrient for us as well it helps to convert T4 to T3 . If your found to be on the low side of FT4 and FT3 even if your "TSH look good" like Dr's like to tell us raising by 25mcg at a time and holding it for six weeks and running labs again to see where your frees are holding and see if you still need dose increase ?

Best wishes on your next steps .

[Pat74 in reply to jgelliss]

Thank you for replying Jgelliss. The Endo is going to run a full thyroid check but hasn't mentioned checking for vitamins so I will bring this up with him. I think you are right about trying to increase my dose slowly and see how I get on. Thanks again.

[jgelliss in reply to Pat74]

Your so welcome . SLOW AND LOW is the better way to go . Feel great ....

[20Arranow]

Hello Pat, goodevening,we both exhibit the same symptoms. Have you had a thyroid scan before? Please try to take one.

I had to travel to India for treatment, because i was dieing,trust me.I only came back to Cameroon after 3months of severe treatment because i was diagnosed of Graves Diseases and Mechanical Arthraglia( the joint and kneels pain).

Recently i took a Thyroid receptor test, which i am looking forward to meet the Endocrinologist on friday with the results.

Please change your Endocrinologist, you might be suffering from hyperthyroidism ( Graves Diseases).

Get well soon

[startagaingirl in reply to 20Arranow]

Definitely not Graves - she is hypo not hyper.

[Pat74]

Hello 20Arranow, thank you for replying. Yes I had a ultrasound on my throat and my thyroid was checked and given the all clear. I will do some research into the conditions you have listed as I haven't heard of them. Many thanks and good luck with your recovery.

[startagaingirl]

Hi and welcome. You are under-medicated - the aim of a levo treated patient is to have tsh around 1 or even below, with ft4 in the top quarter of range and ft3 in the top third. You are a ways off that. Some of your nutrients are also less than optimum. Vit D really should be 100-120 ish, ferritn should be 100-130, folate should be mid-range so 25 ish. Look for other threads with advice on these - any response by SeasideSusie - our resident expert.

With vit d you really need to take co-factors vit k2-mk7 (directs increased calcium uptake to bones rather than soft tissue) and magnesium, which may well also help with joint and muscle pains.

Gillian

[Pat74 in reply to startagaingirl]

Hi startagaingirl and thank you so much for your reply. That's really helpful and constructive information and to be honest it's just nice to not be dismissed for once. I have ordered some supplements already in the form of vit D at 2500iu, magnesium, vit B complex and was going to see if they helped and was going to retest in 6-8 weeks time. It's good to know about the others vitamins mentioned too so I'll do some more research! Thanks again.

[lucylovesgin]

Hi Pat74,

Looks like your CRP result is quite high. Im not sure what the relevance is to your particular case but it may be connected. The test usually tells you if there is inflammation in the body somewhere. Perhaps one of the more knowledgeable members might have more info. Take care. Lucy

[Pat74 in reply to lucylovesgin]

Hi lucylovesgin, thanks for your reply. I too noticed this but the medicheck reviewer put that it wasn't clinically relevant - I'm not too sure what is meant by that. I've not been injured and am not ill (in the traditional sense anyway!) which I understand can cause a higher CRP reading so I'm not sure where the inflammation would be in my body. Will definitely monitor levels going forward. Thanks again. Best wishes.