Hi everyone, My GP rang a couple of days ago. I told her i could not cope with 75mg of levothyroxine as the side effects are too great, (horrific chest pain, blurred vision, brain fog, shin pain, shooting pains to name a few). I quickly reduced to 25mg as i feel i need to give this my best shot. She told me 25mg is better than taking nothing and the endo has already said they will not prescribe T3 instead. (She wrote to them previously and they said they wont see me until my TSH is 10 and in a recent letter from them they said my high TSH was probably a one off in 2013. Also although my TSH which has been steadily rising (last test 7.3) was high the T4 was in range at 9.5 range 7.8 - 21.00 cortisol 251 range 200 -700 ). So Endo says they wont see me and GP says just stick to 25mg if i can. So i am currently trying to decide if to stop taking levothyoxine and wait see if TSH gets to 10 so they will have to see me? or stick at 25mg which means i will always be under medicated. Also currently i am in a lot of pain and stiffness all over body even my bones hurt and i still have the chest pain but coping with that. Is this because i actually should not be taking med's or because i am undermedicated? The strange thing is that my excessive sweating has stopped and i am sleeping better now i am taking the meds. Not sure if that means anything. I am in a bit of a mess really because i do not know if to stop med's and see what happens or try and go see someone privately. Should i see someone out of my home town since my local ones are not that helpful or are they right should i not be taking it??? hope some of you have some answers xx
GP says taking 25mg is better than nothing - Thyroid UK
GP says taking 25mg is better than nothing
If your TSH is 7.3, you are very hypo. So, you really shouldn't stop the levo altogether. And really should be taking more. You need your TSH down around 1 or under.
What is the brand of your levo? Some people react badly to some brands, due to the fillers, so it's often worth trying a different brand.
It's not always a good idea to see an endo, anyway, whether inside or outside your area. The vast majority of endos are diabetes specialist and know next to nothing about thyroid - which is probably why they are so reluctant to see hypo patients. They can have some strange ideas about treatment, and really mess some patients up! So, first thing to do is see if you feel better on a different brand of levo. 
Hi, i am currently on liquid levo which my GP tells me is the best i can hope for. Tried tablets Teva and couple of other brands. It is really awful that apart from you guys all these people including myself have no one to turn to. I am beginning to wonder as i said to slow dragon that the med's are causing an autoimmune response because the side effects are something else. When i started the meds before in 2013 i was in agony for ages and could not walk for months. They said i had Lupus then a couple of years later said not. I asked my son in law (doctor)about a lupus induced flare due to med's and he said it can happen. Obviously any other drug they would take you off but because the thyroxine is my only option they wont tell me to stop. I wonder if T3 or NDT may be better and not cause these problems but no so called professionals to ask. Thanks
Well, as far as I know, liquid levo doesn't have any fillers or anything that would cause a reaction such as you describe. How much are you taking?
I asked my son in law (doctor)about a lupus induced flare due to med's and he said it can happen. Obviously any other drug they would take you off but because the thyroxine is my only option they wont
It's not just because there's no other option, but because without it, you will die. You cannot live without thyroid hormone. And, levo is a hormone, not a drug, not 'meds' in the normal sense of the term.
I wonder if T3 or NDT may be better and not cause these problems but no so called professionals to ask.
Wouldn't do you any good asking a professional anyway, because they wouldn't know. It's rather doubtful that most of them have even heard of NDT, and probably don't know what T3 is, even if they have heard of it. Doctors really are extremely ignorant when it comes to thyroid.
Actually, no-one can tell you if T3 or NDT would be better for you. No-one can predict how you will react to any form of thyroid hormone. The only way to find out is to try it. You could buy your own and try it for yourself. Then, if it works, try and get it prescribed. We're pretty much on our own with this disease, so have to learn to take care of ourselves.
Wow...I feel like I met my match. I have the exact issues as you the only difference between us is I have no thyroid.
My pains are so bad I have days when walking is impossible. I was diagnoised with Psoriatic Arthritis 2 yrs ago that I apparently developed after losing my thyroid.
Have you seen a Rheumotologist for the pains?
I split my thyroid meds it does help combat some of my issues.
OH my. I can not tell you how relieved i am to hear someone else is the same as me. (of course i am sorry for you too that you also have to suffer) In fact i am so overwhelmed I have shed a tear. I have shed a tear because for six years i was living in hell. I must have seen 50 specialists and doctors in that time and not one suggested the medication. I saw a Rheumatologist for the first few years who said it was lupus and treat me with hydroxychloroquine. They then thought it was MS. They eventually discharged me saying they knew something was wrong with me but they did not know what. Helpful..... My GP took me off the levothyroxine a year ago and all my symptoms disappeared. The only problem is my TSH started rising and had to go back on medication, the symptoms i now have prove it is the medication. There was some arthritis linked at the time because my fingers also bent. Do your ankles swell and knees and wrists? My left knee has gone down slightly but remains swollen. I of course do not wish to re visit the hell i was in with the med's and trying to sort an alternative. I understand we have to take our med's with a thyroid condition but i would argue we have the right to know the medication is doing us such harm and i think it is about time they reviewed the medication if it causes such suffering for so many people. xx take care
In several previous posts several different members have all said you need to post your actual vitamin results
Recommend you get full Thyroid and vitamin testing after 6-8 weeks on 50mcg levothyroxine
25mcg is too small a dose
You can split the 50mcg dose into 25mcg waking and 25mcg at bedtime...if it makes it easier to tolerate
Exactly what vitamin supplements are you currently taking?
Doctor told me to stop taking vitamins at the moment. She said my levels had come up and responded to supplements (september 2019) last test. She does not think the vitamin levels have anything to do with it. I hear what your saying about splitting the dose which when and if i am feeling braver i will try. I am actually starting to think however that the hormone replacement is triggering a autoimmune response so i have to be very careful as when i started med's in 2013 i could not walk for months due to pain in joints. Thanks x
Most GP’s know nothing about vitamins and why we need optimal vitamin levels when hypothyroid
NHS will only treat deficiencies
But we need optimal vitamin levels
Eg
Vitamin D
GP will only prescribe vitamin D if under 50nmol
But optimal vitamin D is over 75nmol
On levothyroxine many need vitamin D around 80nmol
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
ncbi.nlm.nih.gov/pubmed/286...
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
endocrine-abstracts.org/ea/...
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
serum B12 - typical range 210-780
GP will only test and treat if under 210
On levothyroxine many people have symptoms if B12 is under 500
ncbi.nlm.nih.gov/pubmed/186...
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms
Ferritin- typical range is 30-150
GP will only test iron if ferritin is under 30
On levothyroxine many people have symptoms if ferritin is under 70...or even 100
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
OMG I can not believe what you are telling me. Guess who is supplementing again as from today. I will pay privately for blood tests in future to keep my levels optimal. Thank you that information is so enlightening. I actually have them all on repeat so i will keep ordering them. The GP has not mentioned vitamins since i last had them checked in september. I do not know what the results where only that i was responding to the supplements and that was fine. Thank you once again x
I agree with Slowdragon that most GPS know nothing about vitamins. In the UK it is not part of their training. I would always get the results of vitamins tested or do them privately and post here as well as doing your own research. Vital to maintain optimal vitamin levels when hypothyroid. Good diet alone is not sufficient. For example, we cannot get much vitamin D from food.
And don’t ever follow GP advice to take multivitamins...at best a waste of money...but can actually make things worse ..
Maplewood
Sorry but your doctor is completely and utterly wrong - I would like to call him something much worse than is allowable on this forum! I am gettng more and more frustrated that they are so lacking in knowledge about everything including vitamins. Have you asked for copies of your results - you are entitled to them and docs will often tell patients they are normal when they are not. They xould be low in range or high in range, even just under or over range and they will tell you they are fne - you are entitled to copies of your results and it is best to get them each time so you can compare them! If you put your results on here together with ranges people who know more than me about it will be able to help you. The docs dont know about vitamins or test for them, let alone optimal ones! Afterall it is our health that is at stake here, not theirs!
JaneCxx
The problem is a lot people just accept what their GP tells them, I did 12 years ago and believed them when they told me it was the menopause. They were completely wrong and I did not go through the menopause until 7 years later. Thyroid disease is not taken seriously by doctors and they don't really know much about it and I think it is too complicated for them and too time consuming to treat as well when you only have a 10 minute appointment with your patient ... I have no idea if it will ever change tbh.
Why did the doctors say that it was menopause? What was your age then?
They assumed it was the menopause because I kept having palpitations,sweating and my periods were all over the place. I was 48 at the time and I actually didn't go through the menopause until I was 55 and didn't really suffer any nasty symptoms unlike when I hyperthyroid. You can read my story on my profile page.
Thank you for your reply.
I am going to get copies and post on here see what you all think. Thank you
I went exactly the same as you when I increased to 75mcg Levo. Shooting pains in my chest and swollen lymph glands. I was better on Teva than Activas but better still on NDT.
Endo says a lot of people cant toletate Levo above 75mcg. He says it caused a Sjogrens flare which was later comfirmed by U/S of parotid glands in neck. Sjogrens causes Lupus type symptoms too x
Gosh really. I will look into that too thank you. Where do you get your NDT from is this from NHS?
No unfortunately. I have had to buy it privately.
I was only diagnosed with Hypo and Sjogrens last year. Its been a steep learning curve. I was just like you and was posting on here how unwell the Levo was making me. I thought I had Leukemia or Thyroid cancer. Thank goodness for the people on this site.
Even though the NHS Endo and the Sjogrens specialist said the Levo had caused me a Sjogrens flare they expressed fear at being struck off “as other doctors have done.”
I didnt even ask them to. They raised it. So they must have thought I needed it.
Such is the fear going against the establishment even for warranted exceptions!
I will look into NDT privately unless you would let me know where i can get it ?. I spent 6 years feeling like i was dying and was backwards and forwards to the GP saying i was short of breath, palpitations, brain fog, electric shocks to name a few. Not once did any one specialist or GP point out it could be the levo causing it. In fact i got the feeling they put (nutter) on my file and dismissed the levo by saying "oh, its only a hormone replacement". I feel they have let me down badly. Surely they have heard of drug induced issues. I have only just recently heard of it and my fight still isn't over. I am pretty sure in this day and age we should have better med's, better support, and somewhere to go for help. Apart from this group of course who have been so supportive, the government need tackling over this.
Regarding doctors and vitamins...
Have you ever wondered where the reference ranges come from for various vitamins and minerals?
In the case of vitamin D the bottom of the range was set, way back in the 1930s (I think) to be just above the level required to avoid rickets. And yet the list of diseases that can be affected by (or made worse by) vitamin D deficiency is huge :
i.pinimg.com/1200x/89/aa/1b...
glutathionepathway.com/wp-c...
It has also been mentioned in relation to Covid-19. People with low vitamin D are more likely to catch Covid-19, and in those who do catch it the lower the vitamin D is the more severely the patient is likely to be affected.
...
The reference range for vitamin B12 was (according to one of Dr Kendrick's blog posts) determined by reference to the levels in seven patients with pernicious anaemia several decades ago.
The reference range for vitamin B12 was (according to one of Dr Kendrick's blog posts) determined by reference to the levels in seven patients with pernicious anaemia several decades ago.
I found the blog post where Dr K mentioned about the 7 patients with pernicious anaemia being used to determine the reference range for B12. He mentions it in the second last paragraph of this post :
drmalcolmkendrick.org/2017/...
The post is mostly about other things than B12, and is well worth reading the whole thing.
On my last test Ferratin levels were 41 and Folate7.6 and Vit D was 89. I can't seem to get Ferratin level up as I think that is too low. Any ideas. I have no thyroid gland and had it removed 19 years ago. I take 5 x 100 MP and 2 x 0.75 at weekends.
I ate pate twice a week when my ferritin was very low.
Meds increase query ??
Why is nothing ever easy?!
Suppressed TSH is okay says endo!
My medication is most unorthodox GP says........
