I have had a nightmare with my thyroid over the past four years - up down up down - they are currently looking at whether I have HASHI's had to have a raft of private tests done (costing a bomb) and seeing private ENDO as NHS are hopeless.
Getting my tests back next week. I was overmedicated apparently back in February my TSH was 0.02 - I was hyperthyroid holding three stone and very anxious depressed and all over the place. I've since reduced from 100mg to 75mg and now lost two stone and had a good two months.
However - now my hair is falling out A LOT every day - I get cold - I am fighting depression - brain fog - puffy face - bad skin - constipation - you name it - I look ten years older - and I don't know if it's because I have gone hypo now - with TSH at 3.85 - or if it's low ferritin - 21 - and low Vitamin D last tested 40
My symptoms got worse after I had a B12 injection in August.
MY eyes are glassy and itchy and ache and I am not sure if it's TED or whether inflammation is high in my body and it's just allergy / auto immune
I suffered a huge bereavement in June - couldn't eat properly for 6 weeks - so could this have caused a swing back to hypo?
It is SO FRUSTRATING AND LIFE DESTROYING I used to be a professional dancer singer actress and this has crippled me. Feels like I will never get back to normal after the last six years. I WANT MY LIFE BACK!
Someone mentioned nascent iodine to me - is this something I would benefit from? Also Natural Dessicated Thryroid? I take vitamin supplements - was advised to come off TH207 and DRIVE when I was hyperthryoid but now I think I might need them again.
Anybody PLEASE can you advise?
I get the next blood screen results back next week of thyroid, ferritin, vit d, b12, zinc.
I am seeing Dr Kevin Shotliff for the first time week after that.
I would be so grateful for your advice.
x
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I am sorry you are having such a rough time. Thyroid hormone imbalances can have far retching effects.
Many members including myself have sort help from private endos. Does yours come with recommendation as not all are as understanding of thyroid issues as others?
Your hypo/hyper symptoms could be down to Hashimotos which is prevalent in people with thyroid issues. As the thyroid gland gets attacked, hormone is dumped into the bloodstream causing hyper symptoms and feelings of being very unwell.
As thyroid hormone eventually depletes ... the attacks lessen and antibody levels should drop. You can ask to be tested for TPOAb & TGAb thyroid antibodies.
The goal of Levothyroxine is to restore a patient to euthyroid status and for most people that means TSH just above or below 1.0.
A TSH of 0.02 is low but can be fine if other results are within a definate range.
A TSH of 3.85 is high if medicating on Levothyroxine and would indicate you are in need of a raise in meds... hence all your symptoms.
You need to be tested for thyroid hormones T4 & T3 (& TSH) and post results complete with ranges (numbers in brackets) for members to comment.
Low thyroid hormone will eventually compromise the body evidenced by all your symptoms. It will also cause deficiencies... and low levels of Vit B12, Vit D, folate and ferritin are common and will need to be supplemented.
Optimal levels will encourage good thyroid hormone synthesis and are not a level that doctors often consider "normal.
If you post your vits & iron levels results complete with ranges ( numbers in brackets) members will not only advise you of optimal levels but also what supplements they have found to be most beneficial.
Remember to always take your Levothyroxine pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.
I wouldn't recommend switching thyroid meds or introducing iodine until achieving optimal levels of iron, nutrients and a good cortisol as all these could be the difference to making your thyroid meds work properly. Others may give you their experiences of NDT and iodine.
If you would like possible feed back on your new endo, repost a new question headed with his name asking members to "PM" you with their experience.
I hope you feel better soon.
Flower
This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.
A TSH of 0.02 on its own does not make you hyper or over-medicated. Hyper is when the FT3 is over-range. Did your doctor do FT4 or FT3?
If you do have Hashi's - which they should have tested for first time round, would have saved a lot of trouble, but they Don't know that - then your levels would certainly go up and down. But you do need to have the FT3 tested. OH! You say you had private tests? So, what were your FT4 and FT3?
If you do have Hashi's, then iodine definately isn't recommended. However, that is controversial, and you need to do a lot of reading before making your own informed decision. Doubtful you'll find a doctor that knows about that stuff. Same goes for NDT - some Hashi's people do badly on it. However, what could possibly do you a lot of good is some T3 added to your T4. However, I have to stress that you're never going to know what's going to suit you, and what isn't, without trying it. It's all trial and error, I'm afraid.
I really feel for you and I too have had ups and downs. Just when you think you're on the right path and something knocks you off again. I'm now realising this just life but us thyroidies get affected by it more I think! So to add to the other sound advice already given to you here:
From my experience emotional traumas really do affect our health, especially when we have thyroid issues. So I'd definitely recommend getting support for the emotional side of things. I'm presently finding EFT and craniosacral therapy helpful. I'm also seeing a doctor of 'functional medicine' who not only looks at thyroid disorders and prescribes NDT but other factors that could be contributing to thyroid disorder symptoms. This more holistic approach has helped me answer lots of unanswered questions. I'm happy to give your further info if you like, I'll PM you.
What I do recommend is you get professional guidance. I've spent many months, probably years in all, guessing what could help me and self treating and I feel because I didn't have the right professional support I've wasted many months chasing my tail. Self treating maybe ok if you've got the health to carry on with life in the meantime but if you're feeling that unwell where life has become very limited, do seek professional guidance and keep in mind about tackling health from a holistic angle: biochemistry/emotions/structure. If all these are in balance, our health will reflect that. I've found if just one aspect is addressed and we don't get well, it's because the other aspects haven't been addressed properly. Best of luck.
A few things in response - I have made an appointment to see Dr Kevin Shotliff - he was on one of the Thyroid suggested Endo lists I've found online. Had a couple of helpful reviews - however, should you be able to recommend any body else please do PM me asap as I am keen to get this right if possible - first time and try to save the pennies and anymore anxiety over getting misdiagnosed.
I am staggered to read that I may not have ever been Hyper or overmedicated when they took my meds down from 100 - 75mg. The NHS Endo took that decision based on my TSH test GAH!!!
However, I was incredibly anxious, high heart rate, irritable, bloated, high cholesterol, and my weight gain was impossible to lose - and the thing of note here - is that as soon as they lowered the levothyroxine - I lost two stone, lost the muscle and joint pains, lost the major anxiety and heart palpitations - and for the first time started sleeping properly after months of bad interrupted sleep and my cholesterol returned to 5.5.
At the moment - I have not gained weight - I continued to lose weight over the summer but that could have been the bereavement and stress I was experiencing. However, with the hair loss, coldness, tiredness, puffy face etc etc it does look Hypo doesn't it? But no weight gain??
I have here the private test results from March 2015 just before they reduced my dosage:
Total T4 124 ( 59-154 )
TSH 0.08 ( 0.27-4.2 )
Free Thyroxine 19.4 (12.0 - 22 )
Free T3 4.9 ( 3.1 - 6.8 )
Thyroglobulin Antibody 413.7 ( 0 - 115 )
Thyroid Peroxidase Antibodies 9.1 ( 0 - 34 )
I also had high cholesterol 6.8 (recommended 3-5), B12 was sub optimal 140, Vit D was sub optimal 40 (Optimal 75 up), Ferritin was very low at 9 (optimal is 80), and I had a vitamin and mineral blood screen done which showed a zinc deficiency 9 (ranges between 11.5-20), omega 3 deficiency 44 (44-100).
I also had high red cell magnesium values, elevated red cell superoxide dismutase activity suggesting a response to oxidative stress in my body and "above average" C Reative Protein which suggested an on going inflammatory process.
I have always tested a "weak positive" IG/ ANA test - I have often put this down to general allergies to dust, pets, hayfever, pollution, mild asthma and what not but wondering if this is auto immune and Hashis - I've been paranoid about autoimmune for years (I'm 35) as my grandmother had chronic rheumatoid arthritus.
I have been ill on and off the last 6 years. My ferritin has rarely gone above 9-21 no matter how hard I try to eat better or take the ferrous / iron supplements.
I was crippled with rickets - osteomalacia - with a Vitamin D level of 8 - I lost weight dropped to 7 stone and lost all my muscle - that triggered other things too. B12 was very very low too.
Now, you see - on hindsight - I am wondering if the real cause of all this has been thyroid all along?
I've racked my brain wondering if it was because I was vegetarian/vegan since birth, or not getting enough sun etc !! It has been suggested to me I must have been seriously deficient for a long time to have gotten so ill with the osteomalacia - I initially presumed ten years of eating disorder and malnutrition triggered the osteomalacia and other deficiencies but now could it have been the thyroid!! I started to struggle with yo yo weight gain and exhaustion, weak muscles etc from the age of 14 and it's been one thing after another since then!
Apologies to ramble on - it's good to get it out to be honest - thank you !! And I know I am not the only one - thank you for responding it has really helped !
I am definitely losing with the NHS so I only get my TSH tested with my GP and get my prescription of Levo from them.
I have been seeing a nutritionist who has helped me with my diet - vitamin deficiencies - and yes FLOWER - thank you so much you are right - I have checked the thyroid UK site for their suggested supplements and important vitamins list.
I was on a schedule of vitamins and supplements to support my thyroid, adrenals and deficiencies but totally fell off that wagon in June post bereavement. Also I am not eating enough and not regularly so that won't help either.
HEA72 - YES PLEASE!!! I would definitely be interested in the Functional Medicine approach please could you DM me? I am based in London.
I have wondered whether acupuncture and other methods may compliment the medication.
RE PRIVATE ENDO - I have two recommended lists one from Thyroid UK and another from another Thyroid Charity online - but I still find it hard to know who to choose. If anybody could recommend I would be really grateful - I will also post a request on here for recommended Endos - nobody responded to my last post two months ago!
Thank you so much Flower for the fab advice on taking my meds I did not realise it had to be an hour before food in the morning nor timed specifically before taking vitamins etc !! Thank you !
Thank you Grey Goose for advising about the NDT and the Iodine - I have read and read and read so much online over the past two years and I am still finding out things - but you are all so right it is trial and error - and all your advice has been very helpful.
I have cut out all gluten - as I am intolerant and because of the effects on thyroid, I do not eat dairy really other than the odd bit of Feta (!) - I have almost cut out sugar entirely, and cut out caffeine. (it's so dull) I am vegetarian so it takes effort to eat well.
Am I really bonkers to think that this has all been just one thyroid wobble and that I could come off the thyroxine and my thyroid might just recover and heal itself once I've nailed the B12, Vit D, Ferritin, zinc, omega 3 deficiencies?
I would be most intrigued to see your thoughts if any on the extra information here - I get my next set of blood tests in next week so will post again - and will try to get a response for finding a recommended endo on here!
My story pretty much the same as yours. Fell into a pattern of poor regular meals as well as emotional stressful situations 3 years ago. No weight gain. Was diagnosed with hyperthy and graves. So here I am going for bloods again today. Just it all affected my heart and had to have two cardio versions done to get back into rhythm.
Feel for you, I really do, but it does help to talk about it and het sone support from others in the same situation.
Thinking of you and all the best.
Charmain - Perth Australia
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