Been feeling lousy for all most 6 months and was diagnosed with lupus... But after a recent blood test because I had kidney pains my GP asked me to go into the surgery.... My TSH was very high, but T4 just within normal range and apparently this was the same in Octobers bloods... Recently been tested for
Addison's as mum has this but cortisol showed higher than normal readings... So I am very confused! My endo cancelled my appointment next week and now it's not for another 8 weeks, GP had called but she's on holiday and now on wait list for emergency when she gets back. She won't put me upto 300mcg as she thinks I am already on high doseage. I have been hypo for 16years . I have read numerous things on the internet about high TSH and the only thing GP said was that my body is going into overdrive to produce T4. Can anyone advise?
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Hi moggie , been on levothyroxine for as long as I can remember. I went from 200mcg last February to 250mcg...but apart from that nothing within my meds as changed. It's all confusing
I think you have misunderstood me - I wanted to know what BRAND of levo you are taking and if this has changed in the last 6 months i.e. have you been on eltroxin or Actavis and changed to something else.
The reason I asked is because the main pharma company that makes most of our levo has changed its formula and this is causing people problems.
Also - do you stick to the basics like no food or drink (except water) within two hours of taking your levo and a four hour gap if you are taking iron or calcium (which includes milk).
It looks like your body is not absorbing your levo so its either the brand you are using or something is interferring with the absorbtion process we just need to figure out if it is either of those and then what to do about it.
I have tried in the past evening and morning taking of meds,because about 12 months ago felt completely shattered constantly, and when bloods came back there had been a changed again... Hence the rise to 250mcg but felt better for a while whilst taking at night until I was suffering from acid and then GP advised to switch back to mornings. I have had to stagger taking other meds because of a terrible sickly feeling when I took them all together...metaformin,fluoxetine, omperozole , plaquelnile and amitripliene (evening) also have to take tramadol for pain! I had a look online about interactions and it's says they are minor ???
Also my cholesterol is 7.1, I have had to wear a 24 hr blood pressure monitor and my heart rate can be high, I have had my gallbladder removed and diagnosed with lupus and fibro, I have coeliac , PBC,vitiligo and PCOS oh, and barratts esphogas .... So not sure if any of these are not helping the situation.
So are you know completely gluten free? I would be pressing my GP for an appt with another endo and not waiting for this one to have a wonderful holiday while you suffer.
I still stay it is an absorption issues so I would be looking closely at the timings of the other meds and making sure they are, at least, four hours away from my levo.
Yep completely gluten and wheat free... It's hard but so worth it! I am going to look at the times I take all meds over the next few days until I go back on Friday, thanks for your advice xx
Sounds like malabsorption. Possibly associated with lupus. Do you have diarrhoea? Possibly you are taking another medicine that is affecting levothyroxine absorption? Have you started drinking coffee within an hour of taking your levothyroxine? Coffee has a big effect on levothyroxine absorption.
You are taking a large dose of levothyroxine but your T4 is lowish. So either the levothyroxine is not being absorbed or you are excreting it more than usual (kidney problem?). So your doctor needs to find out what is happening.
I was diagnosed with coeliac and barratts esphogas last year, but I have lots of other various autoimmune diseases...vitiligo, PBC (liver) Lupus and PCOS. Family history on both sides of autoimmune...Addison's,parathyroid,MS, pericous anaemia to name but a few. I have even experimented in the past in changing from morning to night time taking of my meds but not felt much difference if I am honest....with regards to kidney, that's why I initially went to GP.... Horrendous pain with 5 to 10mins after drinking or eating, but should no infection and GFR down slightly !
It's only since turning 40 that's things have suddenly come to a head...lol!
...how is the gluten free eating going ?....Healing the gut is important when you have auto-immune issues. I'm a Hashi's and Crohns girl - so am on the journey..... !
Oh marz it was a nightmare at first....but once I got the hang of it and double checking foods, it's all settled down... Then I started with acid and bile, so had to change other foods ie cooked breakfasts, spicy stuffs and cheeses! Lol.... But oh how I dream of freshly baked bread! Xxx
I feel fairly sure it's an absorption problem. You are taking so many meds I suggest you try and arrange to talk to your pharmacist to get advice on when to take each one. Given they must be making a fortune out of you they should be able to set aside ten minutes to go through it with you. Maybe suggest they work it out and then talk to you when they have gathered the information.
Get them to write it down as it can be difficult to remember when your thyroid is low. It's possible that some of your problems are due to low thyroid so if you can sort out the potential absorption issue it make may life a lot easier.
Did you take levothyroxine in the hours before your blood was drawn?
Do you separate taking levothyroxine from food, drinks (other than water),supplements and other medicines? By at least an hour - and four hours for calcium, iron and some other things.
Have you been tested for iron-deficiency anaemia? For B12 deficiency (pernicious anaemia)? For vitamin D? For folates?
Hi Rod, I had taken it that morning approx 3hours before... I'd gone to see GP with kidney pain and they took blood there and then, so didn't know I was going to have the blood test.... Iron was fine, b12 was just within range, and vitamin d I take supplements every month as it was quite low during the summer(I have quite bad vitiligo) .
Thinking about it, I had a ACTH short synacthen test a few days earlier and a lupus flare but surely these couldn't have any effect on it?
You have so much going on I would not dream of pretending to know what might be happening. A few pointers to information could, possibly, help you to re-evaluate what is happening and why:
That is, I would assume nothing about interference between diseases, medicines and reliable tests.
B12 being just within range is in the view of many almost certainly deficient. Unless you have had an Active B12 test, with follow up tests if any doubt, I suggest that this really needs to be looked at.
Thanks Rod, Google is becoming my new best friend!
In years gone by , I just ignored the fact I was hypo and lived with it but in the last 12 months autoimmune is dominant in my life and perhaps ignorance was bliss until now! Lol ....
I certainly will be going armed with all sorts of questions when I go back to see my GP at the end of the week
Amanda, I have lived with feeling unwell for 2 years and I had to leave my job. I was told I was hypo 6 months ago and I was told I have hashimoto's or in the GP's words Autoimmune Thyroiditis just 3 weeks ago.
You're right, autoimmune is dominant in someone's life. It is in mine as I have hashimoto's and Raynaud's!
Good luck with your GP appointment and let us know how you get on.
Mine started Christmas 2011 with my gallbladder and it's been a rollercoster since. I worked full time in a very demanding job until about 2 months ago, I just didn't want to give I. But one day when I couldn't get out of bed and found my head so fuzzy, I decided that the business would still be there yet I may not be for my family(3 teens and hubby) . Been off sick since and was actually thinking about returning part time at the end of Jan... Like I said previously, this all came on suddenly various autoimmune diseases within months before and after my 40th...lol
Hi Amanda, yes, I myself was really happy in my job. It was only a simple admin job but I was working there for just over 8 years and I was really good friends with the people I worked with. Unfortunately one day the front of my neck swelled up and I didn't see the GP about it as I put it down to a throat infection. I guess I should've suspected something else when 3 weeks' worth of cold and flu remedies did nothing to help it! Even when the goitre went down I hid it under scarves and polo neck tops. I was sent off for an ultrasound scan and the report for that never reached the GP, only an MRI report. So I wasn't happy about that especially when at the ultrasound scan my thyroid was said to be "bulky on one side".
6 months later I had very bad leg cramps - constant cramping for 3 days! Didn't think it was thyroid related until a nurse examined me and said I looked as though I was suffering from a thyroid condition. I told my boss at work and she wouldn't let me see my own GP about it even though I did some stuff at work on my feet. So I figured if she wasn't going to be understanding about my health then I would take the redundancy money and leave as the company was offering voluntary redundancies to us.
I bumped into my boss in town after the diagnosis - I even told her about my illness and all of a sudden she wants to meet up with me! Funny or what?
Hang in there, you will get somewhere with all of this I'm sure!
Like Rod says: you are likely to be vit B12 deficient. I would ask for a repeat B12 test AND a methylmalonic acid and homocysteine test too, if B12 is below 350 and methylmalonic acid and/or homocysteine are high then you know you are B12 deficient. Taking omeprazole is a risk factor for b12 deficiency.
" omeprazole treatment was associated with an increase in the level of serum thyrotropin in all 10 patients treated with thyroxine, an effect that was reversed by an increase in the thyroxine dose by 37 percent." See "ncbi.nlm.nih.gov/pubmed/166....
So you could be caught in a vicious circle. You have insufficient levothyroxine intake that leads to Barrett's Oesophagus and symptoms of high acid. You are then prescribed omeprazole which reduces your levothyroxine absorption and makes your gastric symptoms worse. You get more omeprazole which ..........
In fact you may not have high acidity at all. The symptoms could just be because your hypothyroidism has slowed down your gut so much and impaired your lower oesophagal sphincter function. If they sort out your thyroid as a priority I think a number of your other symptoms (and need for medications) will disappear.
As for "GP said was that my body is going into overdrive to produce T4". Yes your body is going into overdrive, presumably because your thyroid gland is not working and you are not getting enough levothyroxine into your body. Insist they give you more levothyroxine until they can find out why you are not absorbing it.
I'm assuming you don't forget to take the levothyroxine. If you do you need to find a way of remembering or ask someone to help you.
Maybe print of the two papers I've referenced and take to the GP.
Wow, that's interesting reading..... I had thought my barratts had come from not having gallbladder and liver/bile working overtime or stomach acid then causing it to come up into my lungs causing asthma like symptoms...but after reading the article it's given me food for thought, I had seen one consultant a gastro... who actually turned to myself and hubby , he admitted he had no idea about autoimmune and sent me away like a naughty school girl with fybogel!
It was my new consultant, who did an endoscopy and MRI. He came up trumps, but I will now mention this to him about my TSH and to my endo whenever I get to see her!!! But I shall be armed and ready for my GP!
I have been taking Levo for 16years..... It's like second nature although numerous new meds been introduced within the last 6 months
....sadly consultants do not talk to each other - well only very rarely. So Gastroenterologists would not discuss with Endocrinologists your various symptoms. The GP is like a rabbit caught in the headlights and just keeps prescribing various pills for endless symptoms without looking at the underlying causes. Treating conditions rather than causes seems to be the trend....when it should be the other way around. We need more Functional Medicine Practitioners.
I really doubt that absorption is the only problem here, yes it is a factor, however 200mcg of levo and you have below normal fT4, I know your blood was 11.3 but you said you took your levo 3 hours before the blood! Imagine if you took it 'after' your blood test, it would have been definitely below range!
You need to have further tests, you say you have a cortisol 'above' range, the endo should test you for 'cushings' (ie overly active adrenals), also test for pituitary problems, those need to be ruled out.
I wonder if T3 would make you feel better? can you ask your GP for a trial of say 10mcg for 4 weeks followed by a further 10mcg and then review? (and still be tested for all of the above of course)
The timing of a blood test and taking the drug is much less important for levothyroxine than liothyronine. Because of the relatively long half life (7 days) the body will have accumulated a large amount of levothyroxine (I'm guessing around 12 days worth). Added to this is the slowish absorption of levothyroxine. So the timing will have a small effect, perhaps only 5% but definitely less than 10%.
Even so, 11.3 is low, especially as she is taking 250 mcg levothyroxine. Her doctors should give her sufficient levothyroxine to raise her fT4 to a level where she is clinically euthyroid. If the fT4 becomes elevated and the symptoms persist then further investigations are indicated. I suspect when on sufficient levothyroxine many other symptoms will resolve. This will allow other medications to be discontinued and may well address the malabsorption problem. (If so, the levothyroxine will need to be monitored and reduced as absorption increases). It is likely the current malabsorption of levothyroxine is 'iatrogenic', caused by the the prescribing of drugs that would not be necessary if the thyroid was adequately treated.
Cortisol in hypothyroidism is very complicated. Sometimes (rarely) the adrenals can become weak due to longstanding hypothyroidism. Consequently the patient will be unable to take thyroid hormone without short-term adrenal support. Also, hypothyroidism leads to reduced elimination of cortisol (and other substances) which means that basal cortisol will be high. It's not the adrenals producing too much cortisol, it's the inadequate clearance due to hypothyroidism. Adequate treatment of the hypothyroidism will resolve this without the need for complex tests and a vicious circle of medications and side effects.
I did ask about t3 yesterday, because I have read so much about it recently especially since joining the forum she just said that it needed investigating before giving me anymore medication...she even referred to her journal for guidance on doseage as she said felt uneasy upping to 300mcg( doseage is 250mcg)
I just need to get an appointment with endo now, how very rude of her going on holiday and cancelling my appointment..... Lol!
Just been reading through some of the replies, you must be pleased with the great advise and suggestions people have put forward.
When you see your GP next you might want to ask her about liquid T4. If your body is struggling with the tablet form then the liquid form might just do the trick.
Couldn't of asked for better responses...you have all been fab. Like I said I had just been ignorant to the fact of hypo for over 15years until the last 12 months...so glad you have the knowledge and advice xxx
Hi Amanda - I relate to much of what you say because I have RA and Hypothyroidism - but presently my symptoms relate much more to thyroid issues than RA and, reading between the lines, I think my doctors are wondering if RA is still the correct working diagnosis for my problems now and are considering Lupus or Sjogrens perhaps but they don't tell me.
I take 100mcg Levo, Hydroxichloraquine (Plaquenil) 400mg, Ranitidine (because Omaprazole clashed with the injectable Methotrexate I took for 18 months), AdCal D3 and at present I'm on Fexofenadine (antihistamine) for chronic hives and eczema as well as a very itchy scalp and 20mg Amitriptyline. I also have very dry eyes and weird sensations in my legs and feet - like someone has rubbed them in eucalyptus or Vic's rub with toes that go bright white from poor circulation. I often wake soaked from night sweats despite having gone to bed with freezing cold extremities. My thyroid blood results are within normal range but indicate that I should be on a higher dose of Levothyroxine than my GP is prepared to prescribe. I did get my T3 tested privately though and it was at the lowest end of normal range. I would like my GP to increase my dose of Levo to 125mcg to see if it makes a difference but he says that as my TSH has been good it's best not to mess. I don't understand why my rheumatologist and GPs say that it's the symptoms that count with my RA but when I have unpleasant symptoms for five months they disregard these because my thyroid blood results are just about within normal range. It's so frustrating?!
I take the Levo first thing in the morning on it's own - or rarely with Ranitidine if my tummy is bad. Then an hour or so later I take Hydroxichloraquine (1 pill) with my breakfast. Then in the evening I take the second Hydroxy pill with dinner and at 9pm I take the Amitriptyline and the antihistamine and before I go to bed I take my AdCal D3. None of this is perfect timing because, like yourself I'm on too many meds to get it completely spot on but it's as good as I can manage for now. I took advice from a pharmacist so that's a good suggestion I think. Isn't all this autoimmune stuff nightmarish?X
I took Methotrexate for about a month but LFT was haywire, and now my kidneys... I have had prednisolone but only in very small doses...I know what you mean about nightmarish...I once said to my parents "I'll send you a thank you card" dad looked at me confused "why?"... Laughing "for my faulty genes!" ...both ma and pa have autoimmune diseases, and subsequently all 3 daughters have them too!
It's when you try to explain to people about why you aren't feeling your best, you get that vague look from them!
Hope you all have a wonderful 2014, for me I am determined to get to the bottom of this and fight for some sort of normality, what's normal? Xx
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