Wondering if anyone can help/ offer advice...I really don't know where to turn at the moment.
I have hypothyroidism and take 125mcg daily but still suffer so many symptoms that are really affecting daily life.
I was diagnosed January last year after being rushed into hospital with really elevated CK levels (5000+) so medical staff thought I'd had a heart attack or something! After a lot of testing they found my tsh levels which were 182 and put me on Levo.
I'm pretty certain I have postpartum hypothyroidism bc I had symptoms of hyperthyroidism between 3 & 7 months after giving birth, and then went massively hypo. I don't hold out much faith that I will follow most cases of postpartum hypothyroidism and recover as I was quite ill.
Anyway, every time I see the Endo he listens to my symptoms and brushes them off as nothing to do with my thyroid bc my tsh levels are good now. He even told me I have a PMS problem (which I should talk to the GP about) when I tried to talk about the depression and anxiety I'd been experiencing (none of which I had before the condition). The worst thing is sleep...I used to love my sleep (pre-baby and pre-thyroid) and now my son sleeps through for 12-14 hours a night and I can't appreciate it bc I either wake up every 2/3 hours, or worse...I wake up after 3 hours and that's it! Awake until the following night.
I've been looking at antidepressants recently as a back up to help me cope as I can have really low days. But then I read that Prozac is bad for the thyroid? I already take 5-htp to help sleep/mood and I think it helps but I'm nowhere near my normal self!
I have lots of other physical symptoms too like an absolute inability to lose weight (just gained 7lbs this month doing cardio 6 × a week and eating healthy: little and often) and my hands are dried and cracked and I sometimes get heart palpitations. I also have bad muscle weakness and can only manage cardio for exercise (badly injured muscles trying to do light weights a few weeks ago).
So, I guess my question is: should I be hammering my GP/Endo for more help? I've heard about T3 and I know my Endo won't test for it bc I asked him last year when I was first diagnosed. Should I get it done privately? Or are all these just normal symptoms of the condition, even when treated properly, that I need to learn to live with?
I'm utterly clueless as have never had a health problem before this and only know what I felt like before baby which is, well, a different person. I feel like I've gone from 30-80 in a few months!
Sorry for long post...it's a year's worth of confusion and frustration coming out at once. If anyone has any words of advice, encouragement, anything...I would be so grateful!
TIA
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Twan12
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Thanks for your response! I will post what I can find on here but my last test with the Endo was last June. I was feeling unwell in September/October so my GP did a thyroid function test and since then my Endo has said to have the GP continue with the blood tests. I had an Endo appt in December and he wouldn't test me.
I'm 100% going to do the private test anyway, so will post what old results I can find and then the new ones when I get them.
I do know I'm constantly anemic bc every time I have a blood test they put me on iron tablets and I was low in Vit D last Spring too.
The more experienced members will be along shortly, but, your Endocrinologist really doesn’t have a clue if he/she is ignoring the fact you still have symptoms.
You must of felt awful with a TSH of 182.
You say your on 125mcg of Levothyroxine, are you having blood tests every 6-8 weeks and increasing your Levothyroxine by 25mcg?
You really need to obtain your blood results including ranges to see what’s happening.
If you think this will be too much hassle and know your Endocrinologist has only tested TSH, then if I were you test privately as you have mentioned.
You need to test TSH, T3 & T4 testing TSH only is not adequate.
Just because you are seeing an Endocrinologist doesn’t mean they know best, often they are only diabetes specialist.
I note you mentioned that your exercising and struggling, if you are under medicated that’s the worse thing you can do. If your body is low on T3 then it will be struggling just to do everyday tasks lot alone exercise as well.
With regards weight gain, it doesn’t matter what you do until you get your thyroid medication correct, you will be constantly fighting this.
All your symptoms are thyroid related and taking anti depressants can make you worse.
Here is a link to medi checks, they offer private blood tests, some of the blood test can be done by finger prick at home, others are via venous.
There are cheaper thyroid tests, but this will cover everything you need.
You can arrange for the blood to be drawn at home for an extra charge or, visit a local hospital on medi checks list, they are normally BMI hospitals and this costs £25.00.
Results are emailed to you once you have sent the blood samples off and you can either request comments to be made by a medi checks doctor or click express and they make no comment.
Don’t take your Levothyroxine before your blood draw, and only drink water, no eating. Try and book your test before 9am, if your results show your under medicated then you need to go back to your Endocrinologist, or GP and insist on an increase.
You can always post your results on here and we can give you more advice, but until you have your blood results it’s difficult to see.
Have you been diagnosed with Hashimoto’s? Did you have your vitamins tested.
Some members are forced to self medicate because they don’t get on with Levothyroxine or they have to fight for an increase, or the NHS don’t acknowledge a thyroid problem.
I'm going to get that test with medichecks- I'll order it today!
I don't get my bloods done every 6-8 weeks. When I first left hospital it was every 6 weeks and they increased from 100 to 125. Then when my tsh was within normal range they changed it to what is supposed to be every 6 months but the place is so busy it's more like 9 months.
I was so ill for the first 4-6 months of Levo (weirdly didn't feel that bad before and during hospital- just had muscle cramps) but when I started Levo had a sudden onset of hypo symptoms. I couldn't lift my son, who was then 7/8 months old, was such a nightmare! I was diagnosed with muscle myopathy. One of my Endo's colleagues is doing a medical report on me apparently! Brilliant haha...you'd think they'd want to help me more if I'm so interesting!
I've been diagnosed with Hashimoto's, yes. I'm confused about all that too bc I know mine was postpartum which I've read presents like Hashimoto's, but I don't know if that means I'll have Hashimoto's for life or whether I actually have it at all. It's all so confusing!
I'll post what I can on here of tests they've done on me so far then will post private test I do.
Thanks so much for your help- so nice to have someone to ask about these things- I haven't met one person with thyroid problems yet!
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Hi Twan, I don't know why the profession doesn't understand the seriousness of thyroid dysfunction when it relates to every cell in your body. T4 offers the body a basic hormone but not like the one your body was producing which is T4, 3,2,1 and calcitonin. Sure most of it is T4 and about a quarter of it is T3 but it works together to distribute it throughout your system. The Synthetic T4 needs your body to convert it to the rest and you need a healthy liver which when you are ill you do not possess. It's ridiculous. You need to see how your whole body is affected and causes all those symptoms you have. This kind of doctor understands it much better than conventional ones.
Thanks for your response. I've just watched the video you posted- really interesting, thanks for sharing. I can relate to a lot of it- I definitely don't deal with stress well and for me, the first few months of being a mother and getting up every hour or two to feed certainly put me into a state of extreme stress, which has maybe caused the thyroid problem- not to mention the physical stress of labour! It wasn't a straightforward, easy labour- not that they ever are! But I'm not sure what I can practically do to help myself based on what the guy is saying. I'm sure that my adrenals aren't healthy but I already eat really healthy and exercise regularly. I do yoga to try to help with stress but I do have a busy life with a toddler and work. I take supplements and did try to go gluten free for a period but didn't notice any difference, maybe I should try again... Surely I shouldn't start reducing my medication with a view to stopping it, as he suggests? It's so hard to know what to do to help yourself as there are so many different opinions and views.
I'd love nothing more than to be healthy again and heal myself somehow but does it really work like that?
Functional doctors DO feel you can overcome autoimmune conditions. Usually antibody tests reveal that but the two you mention were not the thyroid tests.
But you can't stop your medications unless your gland has healed and is working again. You are newly diagnosed and I feel your chances of healing are much better but your issues seem a little difference from Hashimoto's. The other posters have brought up other possibilities but I agree with Peanut that vitamin D is crucial for other hormones to work. I've been taking 10,000 i.u. since finding that other doses did not bring up levels. Other nutrients are extremely important like B vitamins but if you have low stomach acid you may not be extracting them so taking betaine hcl with meals help with metabolization.
As you saw your adrenals work hand in hand with thyroid and the saliva test can be helpful. Adrenal Cortex, progesterone, magnesium might be necessary supports but I would not count on your Endo to pursue any of this. I'm afraid we are mostly on our own but there are many functional doctors online and have websites where you can learn much more. This is also good for answering questions:
Hi there, I’m still on the hypothyroidism learning curve myself but don’t lose hope, only 2 weeks ago I did a medichecks test after ending up on anti-depressants and levo only to find that I was low in vitamin D. Since starting the vitamin D supplements I feel like a completely different person! My doctor still won’t acknowledge the vitamin D deficiency as an issue but I haven’t felt this well in months. You will get there, keep trying xx
Yeah, that was in one of my hospital letters as a possible cause for thyroid! Basically, he got stuck so they needed to do a ventouse delivery so I had an episiotomy etc. I have no idea if there was significant blood loss- I wasn't on tablets after birth- it was just very stressful for me (the stuck bit). I did bleed heavily for about 7 weeks following the birth but I was never treated for anything. After writing all of these experiences down on here I'm starting to think I haven't had the best health care haha!
What a pity Docs cannot make the connection between large babies and low thyroid. When the baby senses low thyroid hormones from the Mother - the foetus produces more Growth Hormone. My girls were 9 & 9.7 - some 35 years before diagnosis ! Dr Peatfield explains about big babies in his book - The Thyroid and How To Keep it Healthy.
Do you have the results from when you were pregnant ? Were they really OK ?
I don't! I was just told everything was ok...I didn't think to ask any questions or for letters bc I'd always been healthy so didn't expect anything, if you know what I mean. I'm going to ask my GP surgery to give me access to my test results so hopefully they'll all be recorded.
Reading that, a lot of it rings true. They were supposed to do an MRI to see my pituitary gland when I was in hospital last year but the Endocrinologist stopped it saying it was unnecessary! I'll go to my GP to ask about all this, see if he can suggest anything. Thanks a lot!
You have had lots of replies so lots to read up on. If you have Hashimoto’s you really need to stick with being gluten free for longer than you say.
I’ve been gluten free since September 2017. At first it was a bit of a pain as it was all new to me, but now I’ve got use to it. Supermarkets have lots of free from products.
When GP’s and Endocrinologist state normal on your blood results they mean they are in the normal range of the test, it doesn’t mean that we feel well.
It’s advised for us to feel well our TSH should be 1 or below and our T3 & T4 in the higher figures of the lab ranges.
If they will not increase your Levothyroxine, you will either have to fight for an increase taking proof that TSH needs to be 1 or below from Dr Toft documents, which they may ignore, or go it alone and self medicate, (last resort)
This will mean you will have to source your own thyroid medication, test your own blood via private clinics and either fobbed your GP off and just collect your prescription of Levothyroxine and tell him you feel fine on Levothyroxine knowing your not taking it and just take your own, or, come clean.
Many on here tell their GP and some are open minded as they are still wanting their patients to feel well, others put the fear of god into them claiming they could have heart attacks etc.
Self medicating you can buy NDT which has T4 & T3, or
T3 only or Levothyroxine.
As said self medicating is the last resort, and until you have blood tests to find out what’s going on with your thyroid it’s difficult to advise.
I was on Levothyroxine via my GP, I never felt well despite my blood test saying other wise.
I tried adding T3 to my Levothyroxine and they didn’t work, T3 only I couldn’t go past a certain increase, I’m now on NDT and I’m still not on the correct dosage but, I’m feeling better.
You have to have patience on this journey, which is hard when you feel so ill and desperate to get better.
I do have a lot to think about and read but it's so nice to have all this help and support from people! I'll pause for a while now as hubby has been left on childcare duty all morning while I've been glued to my phone! But ordered blood test already.
Just compiled my results from the last year. Have written them word for word as don't understand most of it! Discovered they did test my T3 at the beginning, I thought they didn't for some reason. These are all the tests since hospital. I'll post the results of the private tests I've ordered when they come. Thanks so much to everyone for taking the time to help!!
End of Jan 2018:
Admitted to hospital with CK levels of 5124 (normal range 28-160)
TSH 182 mU/L.
TPO antibodies: over 1000.
Autoantibody and liver antibody: negative.
Diagnosed with Hashimoto's thyroiditis & hyothyroid myopathy.
12/03/18:
TSH 61 mU/L, free T4 10 pmol/L, free T3 4.2 pmol/L, CK 215 U/L.
shocking that they tested antibodies once they were over 1000 then they didn’t test again! they probably still high and need testing. once you have the private tests back please made a new post for advice, in meantime look up hashimotos on this site because there are lots of steps you can take to reduce antibodies, trial and error for everyone. good luck. have a look at my page on here i’ve got hashis and i’m feeling much better than 4 years ago when first diagnosed
I had the exact same problem as you. Fatigue, inability to stay asleep, weight gain, muscle injuries from any kind of exercise, head to toe tendinitis, constipation, shortness of breath, the list goes on. Various symptoms have happened to me at the start of every winter when my T3 dips below the bottom end of the range. I've then been given an increase in T4 and it works for a while, but I would inevitably crash again. When I reached 100mcg levo I was in pain everyday and gained soooo much weight. I finally found a doctor who would prescribe T3 and I'm now on 75 mcg levothyroxine and 12 mcg compounded sustained release T3 (2 x 6mcg per day). I'm feeling so MUCH better, I've lost 6 lbs, and all tendinitis is gone except for a little left in my elbows which seems to have become chronic. But most of my symptoms are gone. I do think I could go up to 20mcg T3 and feel even better, but not sure my doctor would agree because she's TSH driven. My TSH is sitting at 1.2 right now, not sure if it would be suppressed if I went higher.
I would bet that your T3 is either below normal or at the bottom end of the range. And below normal or low normal T3 means you are hypo no matter how much T4 you are taking or have floating around in your body.
For some reason I can't edit my above response so I'll just add another one. I also had bad brain fog and depression in addition to VERY bad palpitations. You can click on my name to see my various posts.
Thanks for your response! I hate the palpitations, they take my breath away and really freak me out! I'm having a full thyroid test done soon, including T3, so hopefully will know more then.
Forgot to write that you have to get enough magnesium as well, to make the potassium work. Not magnesium oxide or citrate, as those hardly get into your cells. Magnedium bicarbonate is ok, magnesium malate is fine. I take 2 x 400 mg my self.
I had long runs of palpitations that honestly felt like afib. I was getting very nervous that I had something more serious going on with my heart. but those runs are gone, I still get a few palps but they are the normal ones that I have lived with all of my life. Good luck.
Based on those results, from what I have read, heard, experienced, your FT3 is very low (USA conversion is 2.74) and your FT4 is also very low (.77). Many endos/doctors will only go by “in range”, but you can’t thrive when both levels are at teh lowest end of the range. Along with the other great responses, your body might not be converting the T4 into T3. Please let us know your next results. At a recent Thyroid conference, most of the specialists stated that the blood work is better and more precise now. They said that, even on synthetic, you can retest at 5 weeks from a med or dose change. On desiccated or with the addition of synthetic T3, you can test at 4 weeks.
Thanks for your reply! They only tested my T3 once and that was at the very beginning almost a year ago when my tsh was 61, so don't know what my T3 is now. Will know more when I have the test done privately.
Definitely sounds like thyroid. I had the same problems taking synthetic T4. Go to a hormone specialist even though it probably will not be covered by insurance. They will get you started on natural thyroid hormone which is a combination of T3 and T4 (plus more T's never heard of before). Synthetic T4 does not always convert to the usable T3 which is probably what your problem is.
I think your iron results are probably awful and you would benefit from iron supplements. But my comment can't be relied upon and shouldn't be acted on without reference ranges.
You should be able to get the reference ranges for your test results. Ask your surgery or the hospital you saw the endo at which lab does the blood testing - it's probably the pathology lab at the hospital you need, but I'm only guessing. Go through the hospital switchboard and ask for the pathology lab and when you get through ask them for the reference range for adult women for the tests you've had. If you were pregnant at the time of the tests then mention this too.
It is possible to get prescription strength iron supplements without a prescription from some pharmacists - if you are refused by one then try a different chain e.g. if Boots refuse (they often do) try Tesco or Lloyds or an independent pharmacy. Ask for info on here for suitable supplements.
Another possibility is that you eat a decent sized portion of liver once a week. (Most people like lamb's or chicken livers the best. Ox liver and pig liver has a very powerful flavour.)
If you want to do a finger-prick test then your could try this (read both links) :
Hi, I had similar problem after taking 100 Levo for 12 months, my chemist was helpful when I told him my symptoms hadn't changed: not sleeping, exhausted, falling asleep in the day then couldn't sleep at night, in constant pain. Doctor was useless only tested TSH. Finally gave me full blood tests, low vit D, high antibodies. He wouldn't listen when I said I wanted to try T3. Was able to get hold of some, what a difference after one week, all aches and pains went, dry skin, acne, all improved.
Hi, actually I feel worse in the evening! Sometimes I get so anxious I feel scared and worried just before bed, which obviously doesn't help me sleep. It's so unusual for me! I never worried about anything before this, I used to live abroad and travel around the world without a care in the world. Now I'm such a stress head and worry about everything, not all the time, but a good chunk!
Twan 12 I am sorry u are suffering. Doctors seem to base EVERYTHING off TSH, T4, T FREE. In my case I have HASHIMOTO'S it can go hypo or hyper.
Levythoroxin has been as high as 300mcg an changed repeatedly.
Finally my Primary whom I've been seeing for couple of years took the time to review my test results for last 2 yrs.
My TSH was 38 & most doctors would have increased me but she left my dosage at 150mcg and finally my numbers have gone down and I have been losing weight.
Was on T3 with levythoroxin felt good for a while only to have symptoms returned. Tired,no energy,moody,irritable & weight gain.
My experiences is find a doctor who listens but also hears you after all it's your body.
The rollercoaster ride as I call it is HORRIBLE and you need to be persistent.
Can I just say how nice it is that you're all taking the time to offer your thoughts, advice, help. I've never posted anything online like this before and after struggling through the past year on my own and completely clueless, it's a massive relief to have people to talk to about this! I'm sorry I haven't got back to everyone's comments- Monday back at work- I'm reading them all and taking on all the suggestions, so thank you so much! When I have time I will look at them all in detail. Thanks again everyone!
Has anyone spoke to you about the foods that you eat? Some of us suffer from food intolerance's, so this maybe one area to considering investigating. Not everybody know they have them.
Getting an appointment with a Nutritional Therapist would help. They would also be able to assist with getting private tests done to check your full thyroid panel, vitamin d, folate levels etc. They will go over everything, it might a few hundred pounds (includes consultation and bloods) but worth every penny if you get a good one.
Symptoms can and will improve, and some quicker than others.
I have been exactly where you are now. There are some critical pieces of info you need to collect.
1) What is your FT3? You'll probably have to goto private testing.
2) Do you have Hashi's and the accompanying gut dysfunction? If your endo won't do the TPO and TG antibody tests, you'll have to go private.
3) Are you intolerant to problem foods like gluten and dairy? If you can't afford testing for this, you should inspect your diet carefully and eliminate the most common problem foods.
4) Do you have low Total Blood Protein (TBP)? If your reading is below the middle of range, this is a good sign of digestive system dysfunction. Inability to derive the needed amino acids from diet, will precipitate problems with muscle/connective tissue, sleep, immunity.
5) What are your levels of key nutrients like ferritin, B12, D3? Poor diet and/or gut dysfunction will scavenge levels of various vitamins and minerals.
Hi Eddie83, thanks for your response. I've ordered private tests: a full thyroid profile which will look at FT3, TPO & vits etc. I was diagnosed with Hashimoto's and had blood tests confirming (above). I don't think I'm intolerant to any food as I don't have any symptoms after eating anything but maybe I am and I don't know it...I'm seeing my GP in just over a week so I'll see if he'll do the TBP test, worth a shot! Thanks very much for your input!
Please remember that you don't have to have obvious symptoms after consuming something that is tanking your health. I have non-celiac gluten intolerance (sometimes referred to as "silent celiac"). I didn't know that was what was ruining my health, until I saw the results of a test for gliadin antibodies.
With my first child my thyroid was good but since my second child six years later. I went from 148 lbs to 180 lbs and my thyroid is always changing every other month it seems. I take it a day at a time depression and thyroid problems slightly to I keep changing diet plans I've tried many different things. I taken myself off of my mood pill and lost 5 lbs so far. I can't do overactive thing because of a accident in 1996, woke up in 1997 but I still feel like I've let myself down being so big in 1995 I weighed 120 lbs.
I feel always upset because I know I used to could and I still can't rap my head around being this big. I am going to keep trying to loose weight I feel I'll be able to do it if I can start loosing some weight. I'm hear if you want support for your problems on your thyroid. If you want a thyroid buddy I need one too. I hope I helped you in some way.
I'm sorry for your struggles Cindy. It's so hard isn't it. I feel really low in myself too about the weight gain. I go to Slimming World now and follow the diet down to the letter, do regular exercise, stay active etc. And watch as other people lose weight from 'cheating' and I gain! It's so not fair. But we shouldn't beat ourselves up- it's really not our fault! If we're doing whatever we can do to stay healthy, it's kinda out of our hands atm. Are you medication for thyroid? People here have suggested maybe I'm not on the right meds/right dose/not getting enough vits...maybe you're the same?
I've just had my private blood tests back- I got the full thyroid panel.
Looks like everything is in the normal range except my antibodies;
inflammation- CRP - high sensitivity:
0.69 mg/L < 5 R
Iron status- Ferritin- 55.4
ug/L 13 - 150 R
Vitamins:
Seum Folate: >19.8
ug/L > 3.89 R
Active B12: 154
pmol/L 37.5 - 188 R
25 OH vitamin D: 67.5
nmol/L 50 - 175 R
Thyroid hormones:
TSH: 1.71
mIU/L 0.27 - 4.2 R
Free T3: 4.14
pmol/L 3.1 - 6.8 R
Free Thyroxine: 19.6
pmol/L 12 - 22 R
Autoimmunity:
THYROGLOBULIN ANTIBODY: 214
kU/L < 115 R
THYROID PEROXIDASE ANTIBODIES: 204
kIU/L < 34 R
All of it is in green but the Autoimmunity section is in red and looks pretty bad!
This is the comment I got from the doctor:
I note your thyroid history and that you are currently taking 125mcg of levothyroxine daily. Despite this you are still getting symptoms.
Your thyroid hormones are all currently normal indicating that your current dose is appropriate.
Your thyroglobulin antibodies are positive. This can be associated with autoimmune thyroid disease and in particular Hashimoto’s disease.
Your thyroid peroxidase antibodies are elevated. This antibody is commonly associated with autoimmune thyroid disease. It is frequently seen in conditions such as Hashimoto’s disease (where the thyroid becomes underactive).
So....I think it's safe to say I have Hashimoto's. Any comments or advice about these results? Are my symptoms so bad because of the Hashimoto's? Do I have to cut out loads of food from my diet now? (Think I already know the answer to that one!)
Also, something I'm interested to know- because I have an autoimmune disease does that mean I will pick up bugs and infections more easily now...and also how does it effect you in terms of fighting bigger problems in the future, like cancer etc. Should I be worried?
Your ferritin level isn't dreadfully bad. It's quite common on this forum to see people with levels less than 20 or 30, so in comparison yours is not too bad. The optimal level for many of us with thyroid problems is around mid-range or a smidgen over. So with the range you've been given you would ideally have a level of roughly 85 - 100 ug/L as an optimal level.
However, iron supplementing would not be a good idea. You have too little info to make this a safe idea. A full iron panel might show that your serum iron is already high, and if this is the case then supplementing might just make it higher still rather than improving your ferritin level. However if your serum iron was also substantially below optimal then eating foods rich in iron would be helpful. The kind of things that non-vegetarians can eat to improve iron intake are liver, liver pate, black pudding. Non-heme iron (the iron found in plants) is far harder for the body to absorb, but you could search for vegetable sources of iron and add some to your diet.
If you ever decided you wanted to know more about your iron, this is a good private finger-prick test - and there is also a 10% discount code permanently available :
I should point out that you added your last reply to this post almost a week after activity on the thread had stopped. (This forum is fast moving and getting replies for no more than a day or two is quite common.)
For more feedback on your private blood tests you should copy the results into a new post and ask for feedback. Tacking them on to the end of a week old post is unlikely to get much attention.
Thanks very much! I realised that after I posted and have done a new post- thank you! Interesting stuff about the iron, lots to think about. Thanks again
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xx
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