Hi, I've been lurking for a few days on here trying to get information as I have hypothyroid symptoms. I've found the site incredibly helpful already in trying to understand what is going on with me - now 52 and been to Docs over last 18months for various complaints which started with low libido. Thought I needed HRT, and started in May 15 on 1/10 Femoston, but although this helped with insomnia and brain fog (which I just put down to getting older) it didn't do anything else. However as I started to feel like the old me, I was reluctant to stop.
Increasingly I feel tired, lethargic and constantly yawning, no amount of sleep seems to help and can't remember when I last woke up with any energy. Takes an age to get going and often just want to sit and do nothing. Feet always icy, and feel the cold such that others have in the past said 'there must be something wrong with you' - didn't take it seriously though. I get a pain in the very base of my back/spine especially when cold and tired. Early December I had 2 separate Saturdays out for light shopping and was exhausted by 4pm, then needed next 2 days to get over it. I seem to get tearful rather than angry, and am losing interest in things I enjoy. In the last 2 weeks I look puffy in the face in the morning and have dark circles around my eyes, I get body jerks when I'm really tired and tingling/shock type sensations.
So mid December went to Docs and GP ordered a whole list of blood tests - as well as suggesting it might be depression (par for the course I now realise!) although my mood is often low. Had a job to get copy of results but got these last week and since have been getting my head around everything. I also got results for May 15 so I can see how TSH has increased.
Sorry for the long intro, but I'd be grateful for your thoughts. I'm back this week for repeat protein tests and have asked if they'll do the thyroid antibody tests which, given the extent of other tests done, I'm surprised these weren't done. My GP is pretty good in listening and making referrals and I'd like to think when I eventually get to see her she'll be accepting of what I've read up on. However, I get the impression from HU that until I get to 10 she'll just say I'm only just above range and suggest antidepressants again/or repeat the tests in 3 months. I've asked for the Private Docs list (I'm in the UK) in anticipation that I'll need to go that route.
MAY 15 Tests:
Serum cholesterol 4.0mmol/L
Serum triglyceride 0.7mmol/L (<18)
Serum HDL cholesterol 1.83mmol/L (0.9 - 2)
Serum LDL cholesterol 1.85 mmol/L (<4)
Total cholesterol:HDL ratio 2.2
Blood glucose 4.7mmol/L (3.0-6)
Serum FSH 19.1 iu/L (25.8 - 134.8)
Serum LH 12.0 iu/L (7.7 - 58.5)
Serum TSH 3.5 (0.2 - 4.2)
Serum prolactin 279 miu/L (127 - 627)
Serum testosterone 0.3 (0.2-1.7)
DEC 16:
Serum cholesterol 4.9mmol/L
Serum triglyceride 0.85mmol/L (0.3 - 1.8)
Serum HDL cholesterol ABOVE RANGE 1.91 mmol/L (0.9 - 1.45)
*8eGFR using creatinine (CKD-EPI) 90mL/min (Caucasian)
Serum total 25-hydroxy vit D 90.04 nmol/L (50-140)
Rheumatoid factor level <10 iu/mL (0.0 - 40)
Serum urate 239 umol//L (140 - 360)
*Serum creatinine 73 omul/L (45 - 84)
*8eGFR using creatinine per 1.73 square metres 82 mL/min (provided acute kidney injury has been excluded this eGFR is consistent with CKD stage 2 - mild reduction in eGFR compared to young adult
Immunoglobulin A 1.33 g/L (0.8 - 4)
Immunoglobulin G 8.5 g/L (6 - 16)
Immunoglobulin M 0.46 g/L BELOW RANGE (0.5 - 2)
No evidence of abvious monoclonal protein bands
Tissue transglutaminase IGA AN 0.4 u/mL (0.0 - 6.9)
Coeliac disease unlikely
ANA ELISA 0.1 units (0.0 - 0.9)
cyclic citrullinated peptide 1 iu/mL (0.0 - 7)
negative test does not rule out RA
Whatever you can suggest to help me improve my health is welcome - have read a bit on vitamins/minerals but it's mind boggling.
Quick reply - your TSH has gone up and is now above range.
Hopefully your GP will start you on Levothyroxine, preferably starting at 50mcg rather than 25mcg. You should then have bloods tested after about 6 weeks and dose increased. Other things such as cholesterol should improve once your thyroid is properly treated.
Thank you Anthea, I keep trying to rationalise everything, but then feel symptoms so easily and if it's not thyroid what hell is it.
I did take the list in with me and she looked through it and then just handed it back to me, perhaps I was oversensitive but it felt slightly dismissive.
I struggle with my weight more than ever now but I'm not overweight and try to eat healthily, so I got the "you don't present as hypothyroid" comment.
Forgot to mention but I'm always constipated - despite drinking lots - water and tea, and I get colds at the drop off a hat followed by sinus infections, sore throats when ever I'm run down, and post nasal drip.
I want to be hopeful about my GP, but from what I read online it's such a complicated and nuanced condition and a referral to a specialist will be months.
You're symptoms are all identical to how mine were. My TSH was 4.9 at its highest but doc started me on levothyroxine in September. I know I'm not optimum but I can honestly say I feel like a different person and most days I feel near normal after many years of feeling 'not quite right' before all the symptoms you mentioned took hold.
Hang in there, it does get better & there's loads of really helpful & informative people out there too.
Suefromwarks - thank you that's really reassuring to know and pleased that you are feeling better. Seems that the 'nip it in the bud' pragmatic approach really has some substance.
That's the problem it seems, that it all creeps up on you and we bravely soldier on not wanting to be thought as a hypochondriac, but knowing this can't be right. I started to feel that most 75 year olds have more get up and go than me, and it makes you feel so miserable.
Today, well so far anyway, feels like a good day, and I'm starting to learn to accept the good spells - until I can get treatment anyway! Just have to hope that when I next see GP I can hold it together and not turn into a blubbering mess
I was underweight when I got diagnosed with a TSH of 177.7. I had been going to the Dr for years with constipation etc. Just before I got diagnosed by accident my husband left me as my mood was so bad and I had no interest in doing anything. I worked full time and had 2 children. My bowel problems have been so bad that I had to have 1/3 of my large bowel removed 20 months ago and the rest of my bowel doesn't work without laxido. I was diagnosed almost 10 years ago now aged 35. I still work full time and am on 125mg of lethrothyroxine. I did get back with my husband after 18 months apart and we are still together and happy. My worst symptom now is very poor sleep and weight gain. Best of luck with your journey x
Hidden Well, definitely a rising TSH so thyroid antibody testing would be a good idea. FT4 at 14.6 pmol/L (9-23) and FT3 at 4.5pmol/L (3.5 - 6.5) are really too low so coupled with the high TSH you are hypothyroid but might struggle to get a diagnosis, as you already realise you might have to wait until TSH is 10. As Anthea55 has suggested, print off the list of signs and symptoms, mark those that apply and discuss with your GP. You can tell him that ThyroidUK is NHS Choices recommended source of information for thyroid disorders.
Serum B12 534ng/L (197 - 771) This could be better. Recommended level is very top of range, even 900-1000. You could get some Solgar or Jarrows sublingual methylcobalamin lozenges 1000mcg and take 1 daily, dissolve under the tongue to get directly into the bloodstream, don't chew or swallow as stomach acid destroys it.
Serum folate 17.4 ug/L (<3 is deficient) This is good. When taking B12 we need a B Complex to balance the B vits. So if you decide to supplement with B12 you should look for a B Complex that doesn't have a particularly high amount of methylfolate - something like this would be fine biocare.co.uk/default.aspx?... or biocare.co.uk/default.aspx?...
Serum ferritin 46 ug/L (13-150 ug/L) - this is far too low although your GP will say it's fine as it's in range. Ferritin needs to be a minimum of 70 for thyroid hormone to work properly, our own or thyroid hormone replacement. You can raise this quite easily by eating liver once a week. This is so much easier than faffing around with iron supplements. You can have it as a meal or include it in casserole, cottage pie, curry, bolognese sauce, anything meaty.
Susie, thank you for your comments. I take a B complex and have for a while but possibly need a separate b12 as well. I love liver and kidney but have it rarely, so will start getting that - hadn't realiosed ferritin level was on the low side. Hubby has started on cod liver oil and am taking that too as of a few days ago for vit D.
My list of tests is very long so you might have missed Serum total 25-hydroxy vit D 90.04 nmol/L (50-140), does this need increasing?
Recommended level is 100-150nmol/L so you're almost there.
Here is what the Vitamin D Council says about cod liver oil (you need to scroll down quite a way) vitamindcouncil.org/about-v...
"Cod liver oil contains vitamin D. However, the Vitamin D Council recommends against taking cod liver oil because of the high amount of vitamin A there is in cod liver oil compared to vitamin D. Vitamin A is also a fat-soluble vitamin, so your body has a hard time getting rid of it and too much vitamin A can be harmful."
If you wanted to take D3/K2 combo, this is probably the easiest way amazon.co.uk/d/4f2/Nutri-Ad... - I think 3 drops = 1000iu D3 and you'd probably be fine with 2000iu daily throughout the winter then retest in the spring.
Thank you for that correction. It's looking like I need to be more discerning with supplements - like the B complex. So, perhaps take the cod liver oil once/twice a week (now that I have them) and get the D3/K2 you suggest.
The links to sources are really helpful.
I'm wondering if I should just get the online blood tests done anyway, not that I've money to throw around, but if the lab don't do the antibody tests, then I'm another 10 days away from knowing. Everything feels so slow anyway.
Thank you again, getting sluggish now so had better call it a day.
As you've had vitamins and minerals tested already, you're really only missing the antibody tests. These come as part of a thyroid bundle with Blue Horizon and Medichecks, both easy fingerprick tests. Probably the easiest way to get both types of antibodies tested as you're unlikely to get TG antibodies done by your GP.
Hi Solstices - I am new here and struggling with feeling I have Hypothyroid - but slim so stares of disbelief too! But I have lots of symptoms with a rising TSH. I have been supplementing with Premier Research labs liquid vit B complex Max B-ND which contains folate as Folinic Acid which is a form found naturally in fruit and veg and does not need conversion. Folic Acid however is harmful from what I have learned from Chris Kresser - he has an article about. If you start a B complex it is bound to contain Folate usually as folic acid - so be mindful of. That is why I take the Max B as have learned should supplement with all B as will work synergystically - as with everything in our body (I buy from red23.co.uk, a great site) With supplementing I have got my B12 serum up to 550 but stopped then and has fallen in 6 months to 400 even tho I eat liver and lots of red meat etc. I now have terrible burning mouth symptoms, burning hands tingling toes and noise in ears - all nerve damage which everyone on here implies is B12 deficiency. It started 4 yrs ago approx when my serum B12 was 191 and comes and goes. I thought I was OK at 550 but obv not and was surprised to hear the 900/1000 range. But then again blood test B12 means practically zilch as we really need the measure of what is active in cells. (private again apparently)
Others on here have referred me to the PAS forum (pernicious Anemia) Have found some videos on there re B12 so am going to watch.
I have looked at K2/D3 mixed sprays but unfortunately the K2 amount is far too low. I buy liquid D3 drops (amazon) they last for at least 12months. 1 drop 2000iu, often take to boost in the winter as always better to get from the sun when can. Often take 2 drops.
My serum D level was 126 has fallen to 117 despite sun in the summer so def starting to supplement. Always take D3 in the morning or noon or when sun would be high. Studies show Scandanavian countries (high depression rates/low d levels - despite diet being mainly oily fish with high omegas and d levels - researches determined reason - consumed at evening meal which is not when D would naturally be made in high sun - circadian rhythms influential)
Make sure get MK4 K2 from food and supplement with MK7 K2 from a fermented base. bacteria make K2. Buy one where bacteria ferment on a substrate such as Japanese Natto. Cheese such as Brie created by specific bacterial fermentation contain high K2 MK7 but you would need to eat a 1lb + per day. I buy Purenature (amazon) Never take Vit D without K2. See Chris Masterjohn's K2 Resource (just researched) explains/ reference for amounts od in food. Invaluable resource. He is the bees Knees when it comes to fat soluble vitamins.
K2 will not act as a co factor however without vitamin A and other fat sol vitamins which you should get from food.
If you are going to start eating liver again once per wk you will get enough vit A. Just don't eat a low saturated fat diet and get rid of the polyunsaturated oils. Govt recommendations were falsley advised from faudulent and misleading research. If you are still concerned about saturated fat see Dr Malcolm Kendrick's Blog (British GP/cardiology specialism/author of 2 books The great cholesteol con and Doctoring data, Both brilliant, fabulous witty style) His blog what really causes heart disease. You may decide to test homocysteine and fibrinogen levels too then.
LynneG - thank you for all of your info - it's such a horrible place to be. My sister in law is pretty clued up as she has a friend who is hypo and slim too and although SIL comes from the school of 'pull yourself together' she was very supportive when I told her at Christmas of my symptoms. Her advice was to go private - easier said than done though. But it's early days.
Earlier this morning I was full of positivity and that has dwindled - most likely fear at this stage. I have ordered the online blood tests to check on antibodies. But then got freaked by how dark my circles around my eyes are now. In the last 2/3 weeks I look and feel dreadful - more concerned that it's an obvious sign of illness than vanity.
I started to look at vits & minerals and I have to make a note of what it is I'm planning to do/lookup because I get so easily distracted and memory is like a loose string bag, never mind being like a sieve. I read the B12 site and was horrified at the damage a deficiency causes. I imagine that though my level isn't optimum (B12 active - yes private test might be needed) I might not be severely deprived? But who knows!
So, my thinking is that I should get the D3/K2 drops and take them in the morning, and suck on some Jarrows B12 lozenges plus some magnesium
On the lighter side my hubby, who now realises this isn't just a spell of being underpar (S-I-L's influence I suspect) has fully embraced the notion of supplements -we looked into this because he gets a lot of joint pain - arthritis runs in his family. Since he's been on supplements he's declared a new feeling of motivation. Just as he's got into the routine I'm going to disrupt that and take away the cod liver oil! Heyho!
Yes, a good number of years ago I stopped doing the whole 'diet foods/artificial sweetener' thing and kept sweet things as treat, though I try not to eat too much carb stuff especially pastry/pasta - never feel great when I've ODd on it. Cut out added sugar 2/3 years ago, in an attempt to further manage weight - probably a sign that hypo was starting. Basically try to eat homed cooked meat/fish and varied veg plus fruits as I feel better when I do. But am obviously going to need to pay more attention to nutrition as thyroid seems to wreak havoc in that area. But it is such a minefield in knowing the right types and combinations etc. Massively steep learning curve.
Thank you for support - I need a spell away from everything hypo as brain feels overloaded, but I will come back and look up the references you mention.
I feel just like you do - overwhelmed. The nutrition /supplements stuff, I have learned over the years. But these nerve damage/memory symptoms whether to do withB12/Thyroid/autoimmune are really worrying me. And seems such an ominous cramming session ahead. There just aren't enough hours in a day
I can't remember exactly how much K2 is in the D3 combined spray - maybe 40mcg. Chris Masterjohn the go to researcher feels we need 200mcg if supplementing with D min. I chancet it at 100mcg min if also getting from food and I don't take D everyday as my level is not too bad. If you supplement with D your body has no option other than to absorb it and grab on to any calcium it can. If you make D from the sun, it is a whole different ball game and the body has control re the parathyroid gland. So it really is important to get enough K2. manufacturers of supplements jump to provide if they see a market. Trust the experts like C Masterjohn. Saying all this I once was advised to take high curcumin for inflammation and the product contained D. My D was low at 50 then, so when I took all this curcumin which meant I was taking 16000iu of D. which should not be a problem as some with cancer take much higher doses 20,000/50,000 if under a functional clinician. My blood level of D went up to 260 - slightly hi lol. But the mainstream docs did not freak out - I knew nothing then. But I did check my serum calcium then and nothing altered. And again - serum D is not the same as the active D in our cells. Science and medical advice is just guessing half the time. But we do know from the ultimate researchers of research like C Masterjohn that fat sol vitamins are essential and all work as co factors synergystically together. So if you overide the bodily pathways with one then you have to make sure that you are getting enough of the others or trouble ensues. You can't feel the harm calcium deposited in your arteries or muscle causes until you develop heart disease or stroke hardening of the arteries.
And none are effective unless you have a full complement of minerals. Minerals are the cofactors for the vitamins which are co factors for enzymatic function. That's all your minerals, not just magnesium. Plants absorb minerals from soil and rock or filter from the sediments in rivers and oceans. We have not evolved to eat rock. We eat the plants that have processed the rock to make the minerals viable for our function. So the best source of minerals is your food namely plants - not supplements. The trouble is our soils are depleted in many cases of minerals so so are our plants. So we need to find a supplement source of plant derived minerals. Only recently have I found 'Oceans Alive' (amazon) which is a marine phytoplankton providing all minerals and some vitamins in an absorbable useable form for us humans to sustain life. So we eat the plankton, grown in sunlight obviously but not in contaminated seas. To me it is the best bet ever. And contains probiotics as the microorganisms live on the stuff that sustains them. Taking a few drops of this a day may replace lots of supplements except for the fat sol vitamins as in K2, E, A and D. Although will be some D re photosynthesis from the sun.
As SeasideSusie suggests, get your thyroid antibodies checked There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) BOTH need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.
NHS rarely checks TPO and almost never checks TG, appearing to believe it is almost impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this. They have usually struggled to get diagnosed (especially if TSH below 10)
If you have raised antibodies, then guidelines do recommend treating with Levothyroxine if TSH is raised (but still below 10).
If you can not get GP to do these tests, then like many of us, you can get them done privately
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible
If you have high antibodies (Hashimoto's) then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies too. Selenium supplements can help improve conversion of T4 to T3 and reduce antibodies
Thank you SlowDragon, your comments are reassuring about getting antibodies checked. I thought I saw these on the printouts before blood draw but there were so many sheets of paper and it was all so new. I suspect they weren't done though. Not sure why the protein test (immunoglobins) needs to be repeated, but I have asked for the antibody test to be done at the same time. If not done then I'll get the postal tests done.
I almost can't believe how many people suffer in this way and nothing is said - but then no one talks about the menopause either do they. This forum and the thyroid uk site has been such a comfort and an amazing source of information. I'm really grateful.
Reallyfedup - it's reassuring that my thoughts are backed up, even though I know that's just the first hurdle.
Do I ask for IF test or is it known as something else? Just so I can follow up with knowledge?
I don't know if other family members have conditions you mention - we're a pretty dysfunctional family anyway, and with Docs being as in the dark as they seem to be conditions are probably undiagnosed. Although now that I have read up about thyroid I believe my mother probably has it too, but it's gone on for so long that the depression side of things has probably overshadowed the other symptoms. It's certainly something to tip off to them though.
You have been given very good advice here and I will not add to it. I will, however, suggest that you hang on to that doctor! Most of us have a hard time trying to get a free T3 instead of a total T3 out of our docs who are only interested in a useless (usually) TSH. Any doc who will do that many tests is golden.
The advice above is all good. I would add the following tests for thyroid:
Reverse T3
TRH
Selenium
Iodine
And these for your other hormones:
Pregnenolone
Progesterone
24 hour saliva cortisol
DHEA
Free and total testosterone
Estrone
Estradiol
Estriol
CA-125
Also, your immune function looks a little off. Do you have an infection or something in your history compromising immune function, which can throw off your thyroid? Your IgM may not be raised as it looks suppressed, but look at IgA, IgG, or PCR.
I was diagnosed here in Crete back in 2005 with Hashimotos. The TSH - FT4 - FT3 were all in range - but both anti-bodies were very high - and so treatment commenced. The GP mentioned that the Thyroid needed support whilst under attack !
I think Anthony Toft mentions something similar in his booklet - Understanding Thyroid Disorders - which is inexpensive to purchase. Could help your GP and for you to have treatment - as he is establishment approved !
Good Luck ....
LAHs - thus far she has always been very good in not fobbing off - both me and hubby, and instinct tells me she'll come through. However, GPs must be under pressure to tow the NHS line, and I fear that in this instance that may be the case. So it looks like antibodies tests (assuming they are raised) + going armed with Dr Toft info might be what I need.
Marz - thank you, I hadn't realised he was establishment approved, so that's really going to be helpful. Last night I decided to order postal tests anyway, but I thought I had seen that for the antibodies tests more blood was needed and the pinprick wasn't enough - might have that confused though.
Learner1 - as you can imagine the extensive list of tests has been a mire to work through having only just come to this over the last couple of weeks, but I did have concerns when I looked at the immunity results - there's less info online about that, and these are the tests the GP has asked to be repeated, I'm not aware of anything running in the family, but as a baby I spent some time in Singapore in the mid 60s, where I had a major road accident and would most certainly have needed a blood transfusion. I'm not sure of my mother's health at that time in relation to the accident, but I've wondered about possible infection as I read that Hep B is apparently prevalent there.
Aside from easily getting colds and taking an age to get over them (I've always made light of my 'man-flu'), and the sinus/PND, the other symptoms have all progressively come on since the age of 45, but have gotten worse as the years have gone on. At that time I misguidedly thought everything relating to 'the change' wasn't going to happen till my 60s, never realising it was perhaps just around the corner. December 16 was when things seemed to nose dive, and I started to notice how low and lethargic I felt, which is what triggered the visit to the GP.
Thank you all for your help, I feel better armed to stand my ground with GP. I'm a little anxious about the immunity repeat tests but my health is what it is, and a 'head in the stand' approach never achieves anything. Best to try to be proactive and positive - today must be a good day!
Marz - thank you for the link, looks like it'll be handy for clear simple reference - sometimes too wordy can be confusing especially when brain and memory aren't so good.
Just had a look at the blood tests and I had got it wrong so will be ordering tests with antibodies.
To everyone - Again thanks for help and giving a clearer point in the right direction.
If your immune system is suppressed, quiet infections you've been carrying around and can rise up enough to compete with you for nutrients and energy production and can be causing damage to mitochondria and cells, setting up house in certain organ systems, while possibly ignoring others, and creating disease
Given what you've shared, it is quite suspicious that something's going on.
Best wishes and hang in there!
Head in the sand.....
Oops confusion. Was meant to be a correction of Head in the STAND!
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even tho I eat liver and lots of red meat etc. I now have terrible burning mouth symptoms, burning hands tingling toes and noise in ears - all nerve damage which everyone on here implies is B12 deficiency. It started 4 yrs ago approx when my serum B12 was 191 and comes and goes. I thought I was OK at 550 but obv not and was surprised to hear the 900/1000 range. But then again blood test B12 means practically zilch as we really need the measure of what is active in cells. (private again apparently) 
Can someone translate for me please?
Latest Results... 15 month wait for endo
I have Blood Test results - any thoughts, anyone?
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