Hi I've been looking at everyones posts for a while now and thought I would sign up to the community. As you all probably know it is a lonely place having so many symptoms that apparently relate to nothing.
I have suffered for as long as I can remember with numerous symptoms such as low mood, emotional, cold hands and feet, abdominal pain, chronic constipation, pressure head, dry skin and feet, extreme fatigue, lack of concentration, sickness and light headed after exercise sometimes tight chest unable to take deep breath, recent weight gain and joint pain in heel, hip and ankle.
I decided to go private and they suggested thyroid tests. My tsh has been normal for years since I had a goitre and half my thyroid removed in 2015.
Results
TSH 2.51 (.5 - 5.0)
FT4 12 (12-22)
FT3 4.6 (3.1 - 6.8)
THYROXINE TOTAL 78 (59 - 154)
THYROGLOBULIN 17.6 (0-115)
PEROXIDASE 22.7 (0 -34)
Other results from Nov 17
Vit D- 38.5 (80 - 150)
Calcium level 2.1 (2.1 -2.55)
GFR 76 (no range)
Serum total protein level 67 (64- 83)
Serum folate level 2.5 (3.1 - 20.5)
Serum vit b12 336pg/ml (187 - 883)
Ferritin level 45 (20 - 204)
Faecal Calprotectin 99 (0 - 50)
I am now coming off sertraline 50mg to gain a more accurate reading. A lot of the results are borderline but I've had nothing conclusive and what could be causing my I'll health.
Hoping to find people who understand
Many Thanks
S
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SunnyK
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Most patients who have had thyroid issues need TSH between 0.2 - 1.0. Your FT4 is much too low and FT3 on low side
Vitamin deficiencies as direct result
Vitamin D, much too low - needs supplementing to bring up to around 100nmol
Folate below range and B12 is below 500. Ideally FP should test for Pernicious Anaemia before supplementing. In reality they are unlikely to agree
A good vitamin B complex, plus sublingual B12 lozenge daily
Ferritin needs improving too, should be half way in range. Eating liver once a week should help, otherwise you will need to supplement ferrous fumerate
Selenium supplements can help improve conversion
Vitamin C supports adrenals
Only start one supplement at a time and wait 2 weeks before adding another
Detailed supplements advice on Low vitamins and how to improve here
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor - email Dionne at
tukadmin@thyroiduk.org
Also, as GP possibly won't agree you need Levothyroxine, you may need to see a thyroid specialist to get prescribed.
Ask Dionne the list of recommended thyroid specialists
Professor Toft recent article saying, T3 may be necessary for many especially those who have had thyroidectomy or RAI
Thank you SlowDragon, your response is very thorough and has restored my faith that things can be related to thyroid even though I feel like I'm a bother to doctors at the moment.
I'm looking in to a specialist and will keep an eye on my TSH to see if it elevates as I'm coming off the sertraline. It never truly worked. It acted like a quick fix for about 3 months and then I slowly deteriorated again. Much worse this time around with extreme fatigue and toe nails falling off considering I'm still on It. I have had 3-4 years of going and coming off it. I have been on it for over a year now which is longest time and proved it was not the answer to my problems.
I will follow your advice and report back.
Much appreciated.
I'm glad I signed up now as I don't feel so lonely and have others who understand me.
I was having IBS symptoms, and my GP tested faecal calprotectin to rule out bowel disease. As your result is over range, I would raise that with your GP as well.
Thank you Cooper27. My NHS Doctor has referred me to gastro department. I am not sure what they are doing or looking for. I feel very out of control with nhs service that is why I have gone private but I am going to appointment to see if this will give me any help. It is not until end of April though. I hope you get yours sorted. Any advice you need I'm more than happy to talk. I have lived with IBS for years.
Although your results don't show high thyroid antibodies, apparently over 20% with Hashimoto's never have raised antibodies
Have you had scan of Thyroid this can diagnose Hashimoto's. (appears granular )
Definitely ask GP to run coeliac blood test while waiting to see Gastroenterologist
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ask GP for coeliac blood test first
Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance
Yes, I have coeliacs disease. I have been on a strict diet since 2009. Doctor did an IGA test to see if I have been adhering to it and it came back as I am clear of gluten.
Results
IGA 1.5 (0-7)
I am guessing if it was over 7 my body would be responding to gluten in its usual way.
There are some who recommend that those with coeliac disease try a few months dairy free, as the proteins are similar, and can still result in damage to the gut. They reckon around 60% of those with Hashimotos should also cut out dairy, so this is something to look into to see if it will bring antibodies down.
I don't know whether you avoid oats or not, but that's another one to cut out for at least 3-6 months. Some coeliac's can handle them, some can't.
Did they do much to correct deficiencies when you were first diagnosed coeliacs?
Your folate is under range - folate deficiency will cause constipation and some of the other symptoms you have. Is there any reason for this? Do you eat lots of fruit and veggies etc? This needs to be treated (methylfolate) but would do along side taking Vit B12 supplements as this could do with being higher to be optimal.
Folate deficiency see can falsely raise ferritin so are possibly more iron deficient than shown here and you may want to do an iron panel or retest in three months after folate resolved.
Vit D needs treatment.
Your Calcium levels are bordering and better to be mid range. Supplementing the Vit D will increase your calcium. Low magnesium can also not help. Do you have an albumin result as this effects how your calcium reading should be read - adjusted calcium?
Hi Saggyuk, No I was not told of deficiencies at the time and i was 19 so probably did not know to ask. However,even now they (nhs doctors) are not helping. I had results on Jan 15 and couldn' get an appointment until 9th feb. Even though I've had a letter to say to make an appointment.
I have paid for a nutritionist who specialises in thyroid problems and from personal experience too. So I know she walks the walk aswel as talks the talk.
I eat so much veg and fruit, protein, nutribix etx but also too much causes bloatedness etc. Ive tried movicol, lactulose, fibre gel. My constipation has caused a fissure which I had an injection for in 2016. Now I still get blood every time . It's never been right since.
My calcium tests are as follows
Albumin 34 (35-50)
Thanks for your reply. Just talking to you about it makes me feel better about it. I needed someone to understand me holistically.
I'm having a think about your situation as possibly a little more complicated than most so seeing what I can come up with lol! Yes, many of us have been in the same situation as you because of useless docs.
Glad you've decided to stop the ADs - it is likely your physical health at fault and nothing to do with depression and will likely cause more harm than good and I hope it helps to realise that this is likely the case. They basically dish these out when they can't work out the problem to make you go away - plus they get money for doing so!
Yes, bad docs. You should have been tested and treated for all deficiencies when diagnosed coeliacs including B12 injections as it can be very difficult to treat deficiencies on food intake only as this is normally only enough to maintain levels rather than increase. You should have had a dexa scan to to check your bone density so would request this now anyway.
I have couple more questions lol:
GFR is to do with level of kidney function. What were your full kidney and liver function tests?
And have you been on any other meds/drugs for any other reasons including things like ibruprofen?
Hi yes I feel the same. I am certainly making notes of further tests now.
I have been on vit d since November when it was flagged up due to tiredness but since then doc said I'm in grey area so nothing more was needed. Other results from Jan 15th and full thyroid test was 21st Jan.
I take anadin every now and then. I have had ibuprofen when I get a migraine. In the past I've had proponol at time of depression diagnosis. Ive also had gnt (2015/6) a topical treatment for fissure which made me feel light headed so I had to lie down every time I used it.
I have just been given cascara compound to try for constipation.
Yes liver function was
Serum total protein level 67 (64-83)
Serum albumin level 34 (35-50)
Serum alanine aminotransferase 9 (10 - 35)
Serum alkaline phosphatase level 70 (40-150)
Serum bilirubin 7 (0-21)
Serum globulin 33 (20-39)
I don't see any kidney tests. It must have just been the GFR but it doesn't say anything else.
Did you have a problem with calcium levels and absorption of vital vitamins and minerals?
My nutritionist tells me that it doesn't matter what we eat it matters what we digest! Im forever telling doctors that i eat well. I know I need to curb sugary squash but when you can't have sweeteners and your lacking in so much energy with no explanation I've got to get myself through work and just daily life. I don't have caffeine because I get the shakes.
Okay, sometimes when you have so many issues, it can be hard to know what is causing what and where to start lol. It can get complicated as everything affects the function of everything else and once one goes under, others soon follow so apologies for the essay!
Yes, I used to be deficient in everything and am diagnosed with NCGS but calcium is not normally an issue which I will explain below.
First off, unfortunately you have to ditch the ibruprofen and aspirin (anadin). Read through the info of both of these up on Wikipedia and you'll see exactly why someone like you must not use either of these. Use paracetemol in the meantime if you must. You must read any contradictions or side effects on anything new you take so you can see whether it's going to acerbate any of your problems. This includes cascara - have a look through the tabs on the link below and you'll see a great big warning for those with inflammatory bowel issues and similar:
Doctors often prescribe things that shouldn't be taken with certain conditions also as they can't string two pieces of information together so always double check. Many of the things prescribed for constipation and the like such as PPIs often make the problem worse also. For example, you shouldn't have been on the movicol. setraline can bugger up your kidney function and I don't think you need any further irregularities before you sort the ones you have.
Looking at your issues, it might appear that your problem could possibly be linked with your stomach acids:
Folate, along side other things, is required to make stomach acids so deficiency in such could cause this problem. Stomach acids are required to absorb things from your food so It's just begger's belief that once you have low stomach acids, you then can't absorb the things you need to make the acid in the blinking first place meaning a never ending cycle lol! There are many people here I believe who have circumvented this problem by taking something that basically is stomach acids but you should do a new post titled low stomach acids and healing your gut and get the best advice on exactly what this something is and what to take and what not to do as never had to do this myself so clueless.
Obviously correcting the folate deficiency is vital as you are under range. The folic acid given by GPs is the inactive version so you would be better getting some of the active methylfolate but again, you would be best to quickly ask others what dosage and how long to supplement in a new post as also have not had to do this one.
HOWEVER, because folate and B12 are synergistic plus you've clearly got absorption issues, I would be suspicious of this result which is far from optimal anyway. Correcting folate deficiency if you have B12 deficiency is dangerous, THe serum B12 test you've had is a count on all B12 whether active or not and doesn't give a clear picture in some cases. Active meaning the version of it your body can actually use and inactive being stuff body can't use. I would suggest an active B12 blood test before proceeding with folate/b12 supplements in case there is an issue there. If this comes back low, I would test properly for pernicious anaemia. I say this because pernicious anaemia can also cause stomach issues like you mention as indicated in the wikipedia for low acids.
In regards to vitamin D, in my opinion your doc is a plonker because even the NICE guidelines (which they are supposed to follow) determine this figure to be insufficient for many people including those with malabsorption and advises treatment required when in the 30-50 range. It is still only a few points away from "severely deficient". Thryoids need it at 70+. I would push your dose up to at least 3200iu per day for three months and then retest. I would imagine you need more tbh as the 2000 you've been taken haven't done that much in that amount of time.I have massive problems when my vit d goes below 50 and it's quite clearly under the recommended ranges used on the blood test so doc is even disagreeing with the lab report????
You can print this off and shove in face of plonker doc!
Next is calcium which is the most regulated substance in your body and your system has a lot of ways to ensure stable blood levels and even has its own thermostat. If it can't get enough in your diet, it will take from your bones even if it destroys them in the process. Yours is on the bottom of the range and yes the adjusted calcium seems like your levels are okay.
However (lol!) like with the B12, the serum calcium also tests all calcium whether active or not - active is called ionized calcium and because active calcium binds to albumin, they use an adjustment factor to take albumin level into account and basically guesstimate your ionized active calcium level. This is not your real level of active calcium, just an educated guess. Which is fine for the most part apart from people who have protein irregularities in their blood - like you have with albumin below range and possibly means the adjusted calcium guesstimate is not reliable enough in these cases.
Now in all honesty I expect that dealing with the Vit D and stomach issues will increase these levels anyway but you should retest in three months. If that calcium level drops any tiny bit lower or won't improve even if stomach healed, I would suggest getting the ionised calcium test and a PTH test (parathyroid). This is also because your parathyroids (the calcium thermostat) can be damaged in thyroid surgery and can also cause low stomach acids. THis is more an if all else fails scenario and calcium drops further and you're still at a loss.
Although there are many reasons for under range albumin and Serum alanine aminotransferase, they are just as easily caused by malutrition which is likely in your case.
I really can't believe you're not iron deficient so either get an iron panel and blood count (although still might not be definitive whilst you still have folate deficiency) or do these and retest ferritin once the folate deficiency has cleared. Try and increase in your diet - liver/chicken liver pate in the meantime maybe. I'm not sure you want to be taking iron supplements while your stomach is still a problem as harsh on this area. If iron comes back deficient later, ask for iron injections to bypass your stomach.
Just a little point. Iodine deficiency will cause goitre and is another one of those little buggers you need to make stomach acids. This is not one to supplement though especially if you already have thyroid issues so ensure this is included in your food. There was an article on here in the past week that indicated that if you're not eating white fish (cod) or drinking milk, you're likely to be deficient. So eat/drink these and take selenium at rda.
You have been referred for your stomach - I imagine to look for other inflammatory bowel issues but see what you can do to deal with it the mean time as suggested. Many coeliacs do also have other food intolerances such as dairy. The effects of these are not so complicated or long though so you could maybe try a six week elimination diet (just google this) where you basically take most food out of your diet and then add them back in to check if any reactions.
Note - check all supplements for gluten (and sweetners) - Some have gluten in but even those that state GF. I'm really sensitive and cannot tolerate anything derived from wheat or barley including anything supposed to be processed so much it's under 20ppm - some of us have additional "allergies" to things like barley so doesn't matter how low the gluten is (although less effect and different to that the autoimmune reaction for gluten). This includes trocopherols and maltodextrin often in those stating GF (maybe check diet too). You mentioned no sweetners - I also can't stomach these and can be found in the supplement ingredients - things like mannitol. If you have any probs finding ones that are okay - ping me a message
Maybe switch the squash for something better like pure and non concentrated orange juice with just the one ingredient - oranges lol - many squashes have lots of crap in them - chemicals and what not, might not be helping. Try not to eat anything that has chemical/substance names that you simply do not know what the hell it is and try eating things as near to it's natural and unprocessed form as possible.
You may also want to check your blood sugar levels - can be done for free in most pharmacies and there are other things you can check and rule out but start slowly and see what you're left with once you removed some of the more obvious.
Apologies again for the essay, and this is by no means a definitive list of what could be the issues but they're a good place to start I suppose lol!
In summery and to do list:
Remember it's not in your head and docs are ****** - which ever expletive you wish to enter lol!
Test active B12 before supplementing anything - investigate PA if low maybe, if okayish start B12 Methylcobalamin at least 2000mcg, maybe 5000mcg with good B complex (thorne basic B) to get to better levels.
Request dexa scan that you should have had upon coeliacs diagnosis.
increase Vit D supplements, Add K2 and magnesium
get methylfolate after advice of how much and how long,
try stomach acid thingy for lack of better description after advice on here,
Later:
Retest everything after three months including iron and see if anything has changed or anything has improved to start linking what is being caused by what - you can pay for your own private tests if docs wont do.
Please bear in mind I'm no expert, these are just a few things I've come across
Wow thanks. This has certainly opened my eyes to my appointment in April with Gastro. I am going to take a note of things with me to make sure I get the most out of my appointment.
I rarely take pain killers anyway but will definately just take paracetamol while I'm coming off AD.
As far as diet goes I am quite good at recognising what suits and doesn't and have done an elimination process before-and sweeteners were the culprit. I also do not drink alcohol its the worst.I don't have any sweeteners at all whether that be the advertised natural or hidden ones made from carbs like maltodextrin.
The squash I have is belvoir and has very little ingredients plus its fresh juice so it doesn' last long once opened and I will also swap to fresh apple juice diluted in sparkling highland spring water.
I eat a lot of salmon, mackerel, cod, fresh tuna, chicken and I will drink milk too. I love fage greek yog. Im not a fan of red meat but i do have a bag of spinach per week. However, it would be good to know of other allergies. Private doctor said he thinks it would be good to do that and he has a service for it so we will take one step at a time.
I feel like my diet isn' bad but could be better suited to me now with all my problems and so I'm hoping that nutritionist can put me on the right path.
Supplements and the treatments for constipation are often loaded with fillers and sweeteners. That' why I came off movicol. It was making it worse. Plus the taste was awful. I'm so glad I'm not the only one needed to check sweeteners etc. When the doctor prescribes something he doesn't even want to check ingredients and tells me to sort it out with chemist as she will have a better understanding so I basically went for nothing. I just think they think its not real im being ott etc. I always leave in tears or distressed frustrated.
In reply to Cooper, I don't eat oats. There are certain foods that make me really tired immediately after consuming them, oats been one. They do not give me energy lol.
Saggyuk, your are a star. I have printed everything off and highlighted everything for my new to do list.
Hiya, yes you certainly seem to be up on the good diet and whats good/bad then- was just mentioning a few things that can cause problems just in case. In regards to the aspirin/ibruprofin - this is because both of these can ruin the stomach lining.
So I suppose it's down to why you're not absorbing anything then and resolving the stomach problem - hopefully its just a case that where your stomach was so damaged and in a bad way, its been too difficult to get back out of it - especially where docs did nothing to sort the deficiencies you would have had.
Gosh - I love love the belvoir pressed elderflower one lol. Might want to leave out the sparkling water for a while as can also upset stomach linings if have problems already - I hate to be a misery lol. Some of the old fashioned cordials made in the traditional way can actually contain quite a lot of vitmains so might be worth looking at them as might help - I remember one called Mr Fitspatricks blood tonic cordial had quite a fw but have a google.
And I was gutted when they changed the hartly jelly pots to steviol rather than sugar. Hadn't realised, ate one and felt nauseous and bloaty all night and had tingly tongue and lips - urrghh lol
I went through a long stage of trying to find right water as everything tasted like metal or blood. Just gagged for ages. Doc gave me ranitidine but it didn't work. It's made me very fussy with drinks etc now. Evian and highland spring are the way.
I'll get there though. Things are coming to light now
There are numerous deficiencies that can lead to a metallic taste including B12/Vit D zinc etc plus anaemia. If sorting out your tummy and deficiencies doesn't make it go away, you could always check for diabeties and kidney function etc
Thank you. I'm now on anti biotics for a UTI. I have never had one before but awful pains in my lower back. Doctor has sent off urine sample for further testing. Diabetes checked and fine.
Sophiak ~ I can sympathise with the constipation issues ~ I too have had a lifelong problem which has only been resolved by taking magnesium citrate powder ~ I use viridian, but there's many others. It has made a huge difference to me and I am grateful to members for suggesting it. I dissolve in water or fruit juice and drink before bed ~ couldn't live without it now. I also have Linusit golden linseed, which helps and has the added benefit of omega 3, but magnesium citrate will help you so much ~ I have tried all sorts of remedies like you, but never found a real solution, just had horrible bloating and pain, then back to the usual symptoms as you describe. I'm glad you've found the forum ~ members are so knowledgable and helpful.
I will give it ago. I have magnesium oil atm. I'll also chat to my nutritionist. She looked at my tongue and nails and said I was deficient even with the oil so that might be a better solution.
I also take vit d3 2000 lu doc said I'm in grey area and not low. She also said calcium is fine.
I had these results printed off to show private doctor instead of having them done again. He instantly said thyroid but we are on a long road ahead but a positive one I think. First task sertraline elimination. Yes I do feel like already I've come to the right place here. I'm learning that you have be the professional of your own health/illnesses so I'm glad this community exists.
Yes, I agree, ditch the sertraline ~ folate and B12 will help you more, and as you're supplementing Vit D, you may need to take Vit K2 as well as the magnesium. Don't worry about the disbelieving GPs, most of us have been there, I can't see why they're so quick to dismiss thyroid problems when you have a history of them, but you will find a solution on here. :0) x
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