Really am at the end of my tether with a disinterested GP and a seemingly clueless endo.
I was diagnosed with hypothyroidism 3 years ago after a battle with my GP over my TSH result which was nearing 6. I felt awful, was experiencing many symptoms to include a feeling like wading through mud, all thought processes slowing to near halt and anxiety, panic attacks and depression to the point I almost took my own life. I couldn't see the wood for the trees and ended up having to leave my job. I was eventually prescribed levo and have managed to regain a certain degree of functionality over the last couple years, got a new job and although not completely better, I was able to get by.
Until recently, all my old symptoms are back with a vengeance (chronic fatigue, weight gain, muscle cramps/pain, confusion, memory problems, slow thought processes etc) and I feel like history is repeating itself. I am currently off work. My GP is just not interested and simply tells me my results are 'normal' and although my endo is marginally more receptive and has agreed to do more blood tests I'm not entirely convinced he knows what to do with them. My levo has been increased to 200mcg a day, i am due to be referred to the sleep apnea clinic for assessment and I see the endo again in 6 weeks.
I'm desperate, I fear I'm going to have to give up the career I've worked so hard for as I simply cannot function like this. It's verging on dangerous and in my line of work especially, this is not a good thing.
I felt best (although not symptom free) when my TSH was 1.8 which from what I can gather falls in line with optimal level being under 2. I have been experiencing hair loss (coming out in clumps) which if I've understood what I've read correctly this could be down to my ferritin levels being only 18 and optimal level being at least 60 or 80 if experiencing hair loss. Other than that I'm not sure. Any help would be greatly appreciated. Reference ranges given in brackets. Blood tests are from sample taken in the morning at 10:15am.
TSH - 3.4 mu/L (0.35-5.50)
FREE T4 - 16.2 pmol/L (10.0-20.0)
FREE T3 - 3.9 pmol/L (3.5-6.5)
TPO antibodies - >1000 IU/ml (<35)
Cortisol - 210 nmol/L (200-500)
Ferritin - 18 ug/L (10-291)
Folate - 6.60 ug/L (>4.0)
Vitamin B12 - 301 ng/L (211-911)
prolactin - 143 mu/L (59-619)
FSH - 5.2 U/L (3.0-10.0)
LH - 3.6 U/L (2.0-13.0)
IGF-1 - 153 ng/ml (115-307)
oestradiol - 166 pmol/L (72-529)
Haemoglobin A1c - 39 mmol/mol (20-41)
My vit D and zinc levels have been checked and are normal (I don't have the actual results to hand). I am on active supplementation for both.
I also have results of urea and electolytes, liver function tests and bone profile which all appear to be normal. If you think they may help you help me, let me know and I'll post these up also.
Forgot to mention I also have a mutinodular goitre, dry skin and painful heavy and irregular periods. Sorry brain fog got me again. It helps to write things down
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Scoobs33
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Your ferritin, folate and vitamin B12 are too low.
You are within the reference ranges so the NHS won't treat you.
Ferritin buy 84 ferrous fumarate and supplement one two times per day with a vitamin C supplement.Take 4 hours away from thyroid meds and 2 hours away from other food, drink and supplements. After taking the course wait 7 days and get retested you want a level over 80.
Folate take a good B complex. Jarrows or Solgar.
Vitamin B12 get methlycolbalamine lozenges either Jarrows or Solgar. Get your level to 1000.
Best and easiest place to get all supplements is Amazon.
It would be a good idea to put in your vitamin D result as some GPs don't prescribe or tell patients to take enough to ever get them to an optimal level. You want a level of 100nmol/L.
Your TSH is too high you want it near 1, your T3 is too low you want it around 5. You actually need to see an endo not go to the sleep clinic though I suggest regardless you take your blood test results with you.
Your haemoglobin A1C, while in range, you want as low as possible so you should change your diet to exclude or drastically reduce refined carbs like bread and pasta, and have a more low carb high fat diet. This means eating a lot more and a greater variety of vegetables as part of your meals. This will help your gut health as well which helps absorption of nutrients so hopefully you won't have to take B complex or iron supplements for ever.
I'm on a phone do can't post links however search for non-anaemic iron deficiency on patient.info. Then read it.
There is loads of information on LCHF diets from reputable sources including the universities of Harvard in the US and the Newcastle in the UK, even though the NHS doesn't endorse the diet due to the influence of food manufacturers. Some of the information explains the link to other diseases apart from diabetes.
When you go to the sleep clinic ask the doctor if insufficient hormone replacement, which you have experienced first hand, and non-optimal nutrients such low iron and low vitamin D cause problems with sleep. Try to not ramble when making points and if possible have a chaperone with you. The chaperone's job is to ensure you get all your points across to the doctor clearly and to listen.
I don't have a copy of my vit D result but I'm on cholecalciferol 20,000IU, one tab weekly.
It's my endo that's sending me to the sleep clinic
I don't eat meat,only fish. I have been told to try a gluten free diet on another forum due to my TPO antibodies being really high. Have no idea, so will look into that and see if I can work out what I need to be eating/not eating for that. I will also have a look at non anaemic iron deficiency as you said, hopefully it's clear enough for my mush of a brain to handle so i can make the changes needed to start feeling better.
I generally do take someone with me to appointments as I have real trouble verbally getting my point across lately, it all comes out as you say, in a ramble. Trouble is they're not well either and are experiencing much of the same problems as I am due to hypothyroidism.
Thanks for your input and taking the time to reply, really do appreciate it
You need your vitamin D result. As while 20,000IU is a good dose it may not be enough for you.
It's likely if you have Hashimoto's you will have trouble absorbing vitamins and minerals so please go gluten free asap. You need to improve your gut health. Oddly enough a LCHF diet would help ensure you avoid a lot of foods with gluten in them.
Scoobs33 As well as the advice already given, you have positive TPO antibodies of over 1000 (range <35) which means you have autoimmune thyroiditis aka Hashimoto's disease. This means the antibodies will attack the thyroid until it is destroyed. You need to try and reduce the antibodies and a few things can help.
1) Adopt a scrupulously gluten free diet. Gluten contains gliadin which triggers antibody attacks. Many me!bers have had great success going gluten free. Some members also need to be dairy free.
2) Supplementing with selenium also helps reduce antibody attacks.
3) Keeping TSH low also is supposed to help reduce the attacks.
Scoobs33 - I empathize with you, I have been where you are and I know it's hell. I am not well equipped to help you with all of your bloodwork but your TSH is high, certainly not at the optimal level and your T3 seems pretty low. I can't compare the optimal levels I know to be good because your ranges are quite different from mine.
Please know you are not alone, there are millions of people across the world suffering with this dreaded illness mainly because of all the toxins in our food and the air we breathe. It's so terrible. And the truth is medical doctors are not trained to deal with thyroid problems, they never check for the root cause of your problem nor do they have updated charts to refer to. They basically rely on your TSH levels and that's not the way to find out what your particular problem is. It's the same way with Endos. They are also clueless as to the proper blood tests to run and then more importantly how to properly interpret them.
I'm in the US and my best suggestion for you is to search for The Office of Dr. Brad Shook (located in N. Carolina). He is a Integrative/holistic Doctor with his degree in chiropractics. It doesn't seem like a chiropractor would be right for you but Dr. Shook specializes in hypo/hashi patients. He is so knowledgeable about thyroid, it astounded me. Finally someone who understood what we were going through!! He has an autoimmune disease himself and has researched for many years. He has a group on Facebook, you just have to request to join the group. There are many patients on there and Dr. Shook provides videos on thyroid problems and the many side effects they cause. It's very enlightening. He also offers long-distance consultations and appointments. The man is a godsend. I just took part in a webinar he provided today.
I think you would be very happy with the information provided on his page. You can ask questions and many times someone from his office will respond plus others patients in his group.
Please check out his group, it's wonderful!! A medical doctor or endo could never help you like he can. I think this is going to become more and more popular as the word gets out because of the extensive knowledge these doctors about thyroid problems. I guarantee you'll be glad you did.
Scoobs33 - I hope it helps you. For me it was so wonderful to find a dr that understand this damn thyroid disease so well. If you research his group for videos he offers for free, he explains everything. Please check it out.
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