Test Result Advice Please. I am new to this website, and need help and advice.
Im sorry this is so long, i hope someone has the patience to read it and advise me. Thank you
I have recently been diagnosed with hypothyroidism just 4 months ago, and put on a low dose of 25mcg of levothyroxine. I am concerned about high cholestorol and serum alkaline phosphatase levels, also i still have horse throat dispite my levels now being in the normal range. Id like to understand whats happening, i dont mind staying on this low dose if its doing the right thing or takes time to adjust, but i want to understand why the other blood tests are raised and if its something anyone can shed light on.
I have been suffering with Chronic fatigue and fibromyalgia for over 12 years, so have several symptoms of mental and physical problems, many that overlap with thyroid issues.
I had early menopause, during the last 6 yrs, i am now postmenopause ( no hot flushes or periods for 18 months now - i am now age 46)
My thyroid was tested in the past and i was told it was normal, results below-
2002 ( ft4 13.8 / tsh 1.3 )
2007 ( ft4 13.8 / tsh 1.96)
again in 2007 ( due to symptoms of extreme fatigue) ft4 12.7 / tsh 2.22
End 2009 - menopause symptoms so severe i had a breakdown - blood tests for those hormones were through the roof - diagnosed menopausal
2010 thyroid tested again - ( ft4 13.1 tsh 1.57)
At that time, after having been getting worse for years the docter said my nervous system ( hpa axis ) is totally depleted due to stress, that as i find it hard to rest i never allow my body to recover, and this has caused chronic fatigue and my hormones may have shut down early due to this.
I have rested for several years, i pace myself, changed my diet, had some improvement with digestive issues, but energy levels still very low, very limited lifestyle and ability to manage day to day.
The last two years ive had horse throat, so bad i could not speak, new chest pains and the weakness getting very bad legs often going from under me. 4 stone weight gain over the last 3 years.
I also have oesophogitis, for many years, and told this can be cause of chest /throat restriction.
Recent Thyroid tests -
06/ 2014 - ft4 11.6 / tsh 7.75 - ( first time im told it was abnormal) I was put on thyroxine 25mg.
Also told my cholestorol was a bit high. I saw the nurse to go through my diet and there is nothing at all in it to raise cholesterol, my diet is healthier much lower fat lower carb than her suggestions. ( so she thought i was lying of course !)
About 2 weeks on thyroxine i felt better than i have felt for years, i lost half a stone and actually could get out of bed every day, i feel a lot more stable mentally, but after about a month physically i relapsed and felt severely exhausted again, bedridden for several days a week.
Check up 6 weeks later 07/2014 ( i got print out so got other results that were raised and also the suggested ranges )
ft4 14.6 ( range 12-22)
tsh 4.25 ( ! 0.3-4.2)
Ft3 5 ( 3.1-6.8)
Serum c reactive protein 11.2 ( ! <5 )
serum alkaline phosphatase 119 ( ! 35 -104 )
serum HDL cholesterol 1.1 ( ! 1.2-9999)
Was told all is normal, to stay on the 25 mcg, no need to increase dose.
I asked docter about the last 3 tests, but got no advice. I asked for tests to look into antibodys to see if its autoimmune, i explained how id relapsed, but hoped this may be the underlying cause of the last 10 years of illness? but the dose needed increasing maybe? I tried to explain the info id read- that levels should be optimum not mid range, that cholesterol cannot be being caused by my diet, and as the alkaline phosphatase levels indicate liver, bone, or hyper thyroid issues, could that indicate hashimotos or another autoimmune problem? and that i really want some help to understand whats wrong and help to get well.
Doc agreed to do more tests, and look into it.
test results 10/2014
Ft4 14.7 ( range 12-22 )
tsh 2.12 (0.3-4.2)
Ft3 4.2 ( 3.1-6.8)
serum c reactive protein 1.6 ( <5 )
serum alkaline phosphatase 111 (! 35 - 104)
serum HDL cholesterol 1.2 ( 1.2 - 9999)
LDL cholesterol 4.5 ( ! <3 )
total cholesterol 6.4 ( ! 2.8 -5 )
Thyroid peroxidase antibody level HI 158.3 ( 0-35 )
Docter said the 25mcg thyroxine is the right amount of medication, and the antibody levels are showing that i have had underactive thyroid for a long time and that it is not hashimotos, that due to lifestyle i am knackered and they cannot do anything else for me, suggested i push myself to exersize, ( even after i explained i struggle to walk or bathe most days ) I have been ill for so long i know that pushing myself causes relapses, as it happens often.
I can see my thyroid levels seem to be returning to near what they were, generally I feel a slight improvement on my energy, but not as much as i did in the first 3-4 weeks on this medication, I am still housebound most the time, plus my throat keeps closing up again and the horseness has returned. I have noticed i have (new) slight yellowing in the whites of my eyes, i have regained the half a stone in weight i lost when i began on the thyroxine. I am concerned that the alkaline phosphate and cholesterol is still high, and i cannot lower the fat in my diet any more than it is already, i dont understand what the doc said about the antibody thyroid.
Can someone explain or advise? i have tried to research and understand all this, but as im so exhausted i find it too confusing.
Many thanks to anybody who read this far !!
Written by
MrsClanger
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Yet another ignorant GP that has no idea how to treat thyroid conditions. It still staggers and angers me just how bad they are.
You should have had antibodies and FT3 tested years ago instead of just TSH and FT4. I wouldn't mind betting that if they had, it probably would have identified Hashimoto's back then.
Your story shows a typical case of missed diagnosis and the journey of gradual decline that patient will take if they continue without treatment - including the early menopause.
Even with the benefit of hindsight, I'm sure they wouldn't acknowledge or indeed even recognise they had failed to diagnose you.
Your FT4 and FT3 is far too low and that is even more relevant now you have started medication. Leaving you on such a low dose of thyroxine is almost worse than not giving you any medication at all. It is a typical result that you felt slightly better for a short while.
After getting a small kick start from 25mcg your body is craving more. Those dammed antibodies are saying, ' I'll show you'. If you don't get an increase of thyroxine with further gradual increases until you reach OPTIMAL levels and symptom free, you may crash even worse than before treatment started.
Your doctor is wrong not to increase your dose. You can try to persuade her that now you are on treatment and diagnosed with Hashimoto's the majority of patients have improvement of symptoms when their TSH settles at now more than 1 or below with FT3 top of the range. Also you need enough FT4 circulating in the blood stream to allow the body to convert that Into T3. Here is a link which will do a better job of explaining this.
You also need to have your ferritin, Vitamin D and Vitamin B12 levels checked. Many thyroid patients have deficiencies in these (especially after years of neglect) which have similar symptoms to low thyroid and need to be at optimal levels for your thyroid medication to work properly and reduce symptoms.
Sadly, if your doctor won't support you and get educated into how to treat you, it might be necessary to give them the sack. They have failed you too long already. It is negligent to leave you on 25mcg.
editfmrt, I agree with most of what you say but as i understand it MrsClanger has not been diagnosed with hashimotos which is unbeleivable ! ! !
"Docter said the 25mcg thyroxine is the right amount of medication, and the antibody levels are showing that i have had underactive thyroid for a long time and that it is not hashimotos"
Me too flatfeet1. Are these GPs getting worse or is it just because more are being exposed with so many more patients doing their own research and joining forums to get educated?
Yes editfmrt, it shows how lacking in knowledge the doctors are when it comes to thyroid issues.
Its easy getting TFT blood tests but GPs don't know what they mean. but in this case we have the advantage over them and can bamboozle them with our knowledge so they back down. not ideal but seems one way of getting the treatment we know we need.
Mrs. Clanger, positive thyroid peroxidase antibodies means you have autoimmune thyroid disease or Hashimoto's as most of the world calls it. Some GPs and endos are so incredibly up their own pipe they purport not to recognise "Hashimoto's"which is named after the doctor who identified the antibodies although they have no problem recognising autoimmune hyperthyroid disease which was named after Dr. Graves.
25mcg is a ridiculously low dose and should be increased. TSH of people on medication is usually comfortable just above or below 1.0 but some people need it lower or even suppressed in order to feel well. Scroll down to Guidelines and Treatment Options to read Dr. A. Toft's comments in Pulse Magazine thyroiduk.org.uk/tuk/about_... If you want a copy of the article to show your GP email louise.warvill@thyroiduk.org.uk
If you are not already gluten-free you may want to consider it as it can help reduce antibodies as well as helping with digestive issues.
Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.
update - I saw a different doc today, who was willing to listen to what ive learnt so far about the levels and dosage eg optimal levels rather than mid - range, he has advised i go up to 50 mcg, a day, and we moniter how i feel aswell as re doing the blood tests in 6 weeks. We discussed a lot about my condition and both agree that we can try get the things he can ' see clearly ' as optimal as can be.
I asked about all the other blood tests for the vits x minerals, he says the regular blood counts cover my b12 , folate and ferritin, which was fine, and its not standard to do the others ( Calcium / mag/ zinc vit D ) I did not push him on those tests as I do think my diet in general - when i stick to it, is very healthy, so should not be deficient in anything. Im going to stick to eating how i know is best, to optimise everything and shift the weight ive gained.
MrsClanger, good news about the dose increase. You should feel some improvement 7/10 days after increasing. Remember you should not take your Levothyroxine until after your next thyroid blood test.
I'm afraid your GP is wrong to say that full blood count covers ferritin, vitD, B12 and folate, it doesn't, and I would ask for them again when you have your next thyroid blood test.
Thank you clutter, i will ask for those tests to be done, if they refuse i'll pay for it privately. I forgot to ask him about cortisol too, so will add that onto the list. Thank you so much for the advice
I agree entirely with editfmrt. You need more levo but more importantly you need Vit D, B12, folate, ferritin to be checked and you need the levels to be at the top end of the ranges. make sure you get printouts of all your results. You will probably have to buy your own supplements, plenty of advice on here as to which are best. The antibodies are not helping your situation. I had raised TPO and was told no other treatment was required. I read several books and decided to go on gluten and lacto free diet and got rid of the antibodies and had more energy and lost a bit of weight. I have been on this forum 18months now and have learnt so much. I paid for private blood tests from Blue Horizon so that I cold check Tsh, T4 and T3 and also vitamin and mineral levels. It is a steep learning curve but I feel better for it. If your GP won't co-operate go elsewhere. Ask Louise Warvill TUK admin to let you know of suitable medics in your area. 12 years of being unwell is not going to be fixed overnight but the fact that you felt some improvement at first with levo shows your body is crying out for thyroid hormone. Do hope you can make some headway
This is a link and there is lots of good info within it and their are other topics are at the top of the page. If you cursor down to the date November 25, 2002 you will see how too a low dose can affect us. You have to read and learn as by now you will know your doctor knows nothing about how to treat us effectively.
I will go through it step by step over the next few days - its hard for me to process and focus info, but im determined to get there.
I have had two docters, and the new one ( who put me on the levothyroxine - ps i forgot to write levo in my initial post ) has been very random in his advice, and very firmly said its not hashimotos to me before he tested for it then afterwards aswell, he doesnt explain things clearly, and said the middle of the range is where i should be, he did not like me telling him i had read otherwise. I dont understand why docters dont want to help thier patients!?
My previous doctor seemed to be more open and understanding, but obviously not enough, and i was in no fit state to research anything myself and tell him what to look into.
It angers me too, as i have been much sicker than i am now in the past - several years ago i started to develop intolerances, had months of vomiting blood, i used to have shaking fits lasting for days on end, and crazy mood swings, i was given various medications that made me worse.
I feel my mental health could be linked to this thyroid issue, as i feel in a completely different headspace since being on this medication.
I will contact louise to find a new doctor who is more holistic and informed, and get those tests done.
I have to beat this. I studied nutritional therapy before i got ill, but my memory struggles.
The diet info is a very interesting one for me, and quite complex, so i think i will do a new post soon to discuss this further.
Thank you to everyone who has replied to this post, i will do updates on my progress and those test results.
Mrs Clanger, your metal health is more than likely due to your thyroid issues. Or/and low B12, which you more than likely have.
You have said that you know your high cholesterol is not down to what you eat. It isn't. Most of our cholesterol is produced in the liver. But it is not a problem! People with high cholesterol live longer than those with low cholesterol. The body needs it, the brain is mostly made up of it, you need it to make sex hormones! Cholesterol is not the enemy, low fat is! You must eat fat of some sort - animal fat, butter, olive oïl, coconut oïl - but not other vegetable oils.
Eating fat does not make you fat. Your extra pounds are down to your lowered metabulism, and probably isn't fat, anyway, it's water. In order to lose that weight, you need to have optimal T3. Also, those that eat the most fat, lose the most weight, studies hwave found. This whole thing about fat being bad and cholesterol causing heart attacks is one huge great con that Big Pharma is perpetuating and laughing all the way to the bank! Whatever you do, don't take statins.
I am in no way an expert, but have just crawled through the darkest cave to get to where I am today - feeling well, not suicidal. Able to eat a sandwich without putting on 2lbs. Able to think, actually think - the fog has almost lifted. The list is endless really.
But the only way I got here was by following the advice of the wonderful people on here. I had no clue. My GPs even less. I was lost.
But now I have my health in my OWN hands, have negotiated my way through what is, without doubt, very complicated territory, and can categorically say you WILL feel better if you listen to the advice on here.
Don't slam youself for not understanding it all straight off the bat - I still don't get most of the science, but these people do. All the very best of luck to you xx
Welcome to the forum Mrs Clanger. I can completely relate to your story and frustration. If you have a look at my profile you will see my situation is similar to yours, except the NHS say my symptoms are due to ME and not hypo because TSH is in range. I am very cautiously trying NDT and building up slowly as I am very drug sensitive.
I have learnt so much from this forum and the Thyroid UK site. I am determined to improve my health. My advice to you would be to keep reading and keep posting, everyone on here is very helpful and supportive. I totally agree with others advice that 25mg is too low a dose and needs to be increased. It seems many GPs and even Endos are not that knowledgeable in thyroid matters. Take care of yourself. I am sure you will see improvement s with an increase in dose.
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