I'm new here and would welcome any comments regarding my results and the treatment plan suggested by my GP

Hello all,

I'm a 57-year-old male, diagnosed with hypothyroidism in October 2015 as the result of a range of tests to identify why I had experienced several apparently "hypoglycemic" attacks during the preceding few months. Funnily enough, before my GP told me that I had an underactive thyroid, she went through the list of major symptoms, and it turned out that I wasn't experiencing a single one of them, so the diagnosis came as a complete surprise - both to me and my GP!

Anyway, I was immediately placed on 100 mg Levothyroxine, which was increased to 125 mg about 6 months later. Unfortunately, I don't have the results of any of the tests taken during that time.

Since being on Levothyroxine, I have found that I have actually started to experience a number of symptoms and health "issues", and these have steadily been getting worse. These principally include:

- Fatigue, especially in the morning. I struggle to wake up and don't feel as if I have slept at all. I also have incredibly vivid (and sometimes very disturbing) dreams - so vivid that I often feel as if I've actually been through the experience in the dream, which affects my mood accordingly.

- Inability to lose bodyfat.

- Feeling cold (especially feet and hands)

- Acid reflux. I have been diagnosed with GORD and oesophagitis, and am currently taking a double dose (2x30mg) of Lansoprazole daily, with the aim of healing the inflammation found in my oesophagus during a recent gastroscopy procedure.

- What I'm assuming is what people refer to as "brain fog". My memory and focus is often quite poor, I get words mixed up, I get a lot of headaches, I feel like I have a constantly thick head and tired eyes, and I generally don't feel "with it" - as if I'm operating in some sort of haze

and somehow detached from what is going on. I'm basically not myself!

Concerned that I was gradually getting worse and steadily going downhill, I went to see my GP in March of this year, and she ordered a number of tests. I had been on 125 mg Levo for the best part of a year when those tests were done, and the results were as follows:

Serum TSH = 2.5 [0.3 - 5.5] No biochemical evidence of primary thyroid disease. If on T4 the TSH suggests adequate treatment.

Serum vitamin B12 = 398 [190 - 800]

Calcium 2.15 [2.2 - 2.6] Low

Serum folate = 4.1 [3.0 - 17.0]

Anti-tissue transglutaminase < 4.0 [0.0 - 4.0] Negative results make Coeliac Disease unlikely.

Vitamin D = 27 [24 - 167] Vitamin D results less than 30 are consistent with Vitamin D deficiency.

As a result of the above, I my dose of Levothyroxine was increased to 150 mg and I was placed on a 6-week course of high-dose Vitamin D (1 dose of 6000 IU once a week for 6 weeks).

Unfortunately, my various symptoms and issues continued to worsen, and I had a review with my GP early in May. During the discussion with her, and having done some research, I enquired whether she thought that I may have Hashimoto's, especially given that I have had vitiligo since childhood, my mother suffered from MS and my brother has Crohn's. I also asked whether it might be the case that my body wasn't properly converting T4 to T3. My GP therefore agreed to more extensive thyroid testing, the results of which are as follows:

Serum free T4 = 15.5 [10.0 - 19.8]

Serum TSH = 2.9 [0.3 - 5.5]

Serum free T3 = 3.8 [3.5 - 6.7]

Serum thyroid peroxidase antibody concentration 422.3 [0 - 60] Above reference limit. This occurs in autoimmune thyroid disease. In euthyroid individuals, positive antibodies are associated with an increased risk of developing autoimmune thyroid disease in the future.

I returned to see my GP last week, and she said that the results were "inconclusive" with regard to the question of Hashimoto's, and that, in any case, the treatment for that would be the same as the treatment I'm already getting. However, she also said that she would like to get my TSH down to below 2.2 and my T3 (and T4?) towards the top end of the reference range. Consequently, I am now taking 200 mg Levothyroxine daily and am due to have a review with my GP towards the end of June, by which time (I'm told) I should be noticing whether the increased dose of T4 is having any positive effect. If I'm not noticing any improvement by then, the doctor has said that we should then perhaps start looking at things from a different perspective, namely the "mood" angle - which I must admit is causing alarm bells to start ringing!

I'd be very interested to know other people's take on my diagnosis and current treatment, and would greatly welcome any input from those of you who know much more about this than I do.

I'm really sorry if this has been a bit long-winded, but I felt that I needed to provide as complete a picture as possible.

Many thanks!

Steve

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33 Replies

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  • I would suggest that your doctor knows zilch about thyroid.

    * You do have Hashi's and therefore need your TSH at zero. Taking selenium and going on a gluten-free diet might reduce antibodies, help with conversion and make you feel better.

    * Like a lot of Hashi's people, you're not very good at converting. Therefore continuing to increase the T4 is of little help. What you need is to reduce your levo and add in some T3

    Apart from having Hashi's, conversion can be obstructed by low nutrient levels - which will not be help by taking Lansoprazole! Lansoprazole will also lower your absorption of levo. Therefore, you should ask your doctor to test your vit D, vit B12, folate and ferritin, and you should supplement accordingly.

    If you are treated correctly - both with thyroid hormone and nutritional supplements - there will be no need to 'look at thing from the mood angle' - by which she means, prescribing antidepressants!

  • Thank you for your reply and suggestions, greygoose!

    I'm certainly coming round to the idea that I may indeed need to start adding in some T3 and will discuss this possibility with my GP during my next review towards the end of June. Though I'm also getting the feeling that this could be a bit of an uphill struggle?

  • Most definitely an uphill struggle in the present climate. Doctors don't understand T3 to start with. And, now, they're being discouraged from even trying it, due to costs.

    However, you could always buy your own, if you're not afraid of self-treating.

  • DO NOT WAIT TILL END OF JUNE

    go back now

    its urgent that

    ferritin

    b12

    are tested and that you get T3 not levo

    email louise.roberts@thyroiduk.org.uk for a copy of DR Tofts PULSE article which your GP needs to read fast

  • Hi, Steve - I'm a Steve, too. First thing to say is, I'm no expert. With luck, the really knowledgable peeps will reply. However, I have a couple of thoughts... Firstly, your Vitamin D. Way low and 6000 iu once a week is not going to make a jot of difference. Whoever advised you of that needs a brain transplant. You need 10,000 iu every day for 6-8 weeks at which point you should drop to 5,000 iu and get retested. You should take D3 and buffer it with Vitamin K2 Mk 7 to ensure D goes to bones and teeth and is not deposited in arteries. D also hoovers Magnesium so you should supplement that, too. You should take D with the fattiest meal of the day, but at least 4 hours away from your Levo.

    Levo should be taken on an empty tum with a full glass of water - either 1 hour before food or two hours after.

    Your B12 is too low - you should supplement with B12 Methylcobalamin. Natural Factors is a good one. Take the whole pot of sixty and get retested. You need to be right near the top of the lab range. Many a symptom can be laid at a deficient B12 door.

    Your Folate is in your boots. Supplement with methyl folate. You need to be at least half way in the lab range. Amazon is a good resource for decent strength mins and vits.

    Free T3 is at the bottom of the range. Hypos need to be in the top quarter to feel well. Likewise, a TSH of 1 or below is most desirable.

    I'm at a loss as to why your GP says Hashimoto's is inconclusive - I was diagnosed on three hundred and something!

    Finally, and this is very relevant: you are taking PPI's. Lansoprazole. This, as you know, is to lower stomach acid so as to repair your damaged oesophagus. Odly, many hypos have low stomach acid and GERD is quite common. Gut issues are the talk of Hypo town! I speak from experience. However, PPI's will lessen your ability to absorb the essential nutrients and vitamins you need, which may explain your low numbers to an extent. It may also explain why you are on a high-ish dose of Levo. You may not be absorbing it well.

    If you have to continue taking PPI's, then it is important that you start supplementing as things will only get worse. The sooner you can come off the blessed things, the better.

    Nearly all of what I have said is from my own experience, but I am no substitute for a medical professional - always assuming you can find one. Best, Stevie.

  • First they tell you you're not hypo despite the worsening symptoms , then they tell you it's all in your head. blood test rule with the NHS , as long as you're into the ranges ,no matter how low .They will tell you putting on three stone ,losing your hair , temp of 35 in the afternoon , it can't be the levo.

    I had the same trouble on levo. I got the impression the more they gave me and the more my own gland was suppressed, the less T3 and all the other important T's to I had direct from my own gland and the more I had to rely on converting what was synthetic .

  • Hi Steve, more than likely she'll try and fob you off which has happened to many of us in this group. She'll then try and pretend that she knows what she's talking about when it comes to managing Thyroid conditions, when she'll know as much as you can fit on a postage stamp. Arm yourself with as much information as possible. Maybe you are having trouble converting t4 to t3, as your vitamins and nutrients are really low. Look on Stop The Thyroid Madness and the Thyroid UK website. Be prepared to be patronized. I've been through all this with my gp's and I'm now my own advocate for my health. The people in this group are brilliant and are very knowledgeable. Good luck.

  • Thanks, Bijourain!

    I'll certainly take a look at the Stop The Thyroid Madness website.

    You mention that you're now your own advocate for your health. How are doing?

  • I sent off for private blood tests to determine my thyroid function and vitamin/ nutrient levels. I've started taking supplements to get mine up and enzymes to help with digestion. I also added a small amount of t3, about three weeks ago. I'm going to have another test in a couple of months to check if there are any improvements, so I can plan my next step.

  • I'd be interested to hear how you get on with these changes, especially the addition of the T3.

  • I'll let you know🖒

  • Welcome to our forum and you will get lots of help and support and nearly all of us have 'been there' 'done that'.

    We have to read and learn if we have to recover our health.

    First blood tests have to be at the very earliest possible for thyroid hormones (fasting - you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. Levothyroxine (or other thyroid hormones) have to be taken usually when we awake with one glass of water and wait about an hour before eating. Or, you can take at bedtime if you prefer but if having a blood test next day, miss this dose and take after test and bedtime dose as usual.

    Supplementing with B12 should be sublingual methylcobalamin as most of us have stomach issues due to having low acid. As symptoms are the same as 'high' GP is apt to try to reduce acid when we really have to add it in order that protein can be dissolved in our stomach.

    scdlifestyle.com/2012/06/hy...

    Always get a print-out of your results, with the ranges for your own records and you can post if you have a query.

    You have an Autoimmune Thyroid Disease called Hashimoto's - the commonest form of hypothyroidism - and going gluten-free can help reduce the attack on your gland.

    Both FT4 and FT3 are too low - should be in the upper part of the range. Your FT3 is low and TSH is too high. TSH is recommended to be 1 or lower. T4 is inactive (levothyroxine) and has to convert to T3 - T3 is the only Active hormone required in the billions of receptor cells in order for us to function normally. The brain contains the most receptor cells.

    I am not medically qualified but remained undiagnosed for a long time but was diagnosed with other things I didn't have but given treatment.

  • Thank you, shaws!

    I've looked at the SCD Lifestyle website before, and also the Isabella Wentz and Jen Wittman websites. I'd be very interested to know how effective this "gut healing" approach has been for people suffering with Hashimoto's and hypothyroidism. In fact, it was the mere mention of "leaky gut" that had my GP laughing, asking which websites I'd been looking at, and talking rather disparagingly about the existence of such a thing!

    I guess the big decision for all of is to what extent we should follow the advice of GPs and endos on these issues, or follow a different path with regard to treatment. And then, if we do decide to do things in a different way, how do we best deal with the matter of going against the GP's advice in our future dealings with that GP?

  • I was suffering and paid a gastroenterologist who diagnosed me as 'high acid' and gave me prescription. This caused me even more sever stomach pain so stopped it. The problem was not my stomach but the fact that I had undiagnosed hypothyroidism. I don't know how many professionals I I saw and was given different diagnoses - all were (I now know) symptoms of hypothyroidism.

  • As you already know, many researchers do believe leaky gut/intestinal disease is the ground zero of autoimmune disease and thyroid/PA/B12 def. are often linked both ways with overlapping symptoms. This could eventually cause the little brushes/microvilli in the stomach to flatten and become unable to absorb B12 and other essential nutrients, as B12 is one of the hardest vitamins to absorb.

    I'd suggest before supplementing with B12, you ask your GP for further tests as serum B12 test is not reliable - see latest BMJ research document below.

    With your family history and what may be neurological symptoms of B12 deficiency, it is highly possible you may have an absorption issue, which would need parental treatment without delay - supplementing now will make it harder to get a proper diagnosis.

    b12deficiency.info/signs-an...

    cmim.org/pdf2014/funcion.ph...

    BCSH guidelines also mentions the link with thyroid disease as having a higher risk of deficiency.

  • PS

    From Sally Pacholok and Dr J Stuart's excellent book, " Could it be B12? - an Epidemic of Misdiagnoses"

    "B12 deficiency can strike anyone at any age but some patients are at far greater risk than others. THe majority of cases of B12 deficiency stem from malabsorption disorders (see chapter 12), and seniors are at highest risk because 30 to 40 per cent of them have atrophic Gastritis. This condition(as well as chronic proton pump inhibitor use) drastically reduces levels of stomach acid needed to free B12 from animal proteins."

    "The evidence indicates that B12 deficiency is epidemic among seniors"

    "At this time, we believe normal serum levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml."

  • Thank you, Polaris. This certainly looks like it could be another route to go down.

  • Silence was the stern reply - did we say something wrong?

  • Hello,

    No, not all and I'm sorry for not responding immediately. I thank you and everyone else who has responded very much indeed for your replies and recommendations, but I wanted to have a chance to properly digest the feedback received so far, and respond today.

    So... thank you all again for your replies. It's much appreciated :-)

    To be honest, I'm finding it all a bit daunting and there seems to be so much information that conflicts with what my doctor has been telling me, that it's difficult to know exactly where to start with things. I'm certainly getting the message loud and clear that the knowledge and attitude of GPs seem to be very poor when it comes to thyroid issues Indeed, when I mentioned the word "Hashimoto's" to my doctor, she crossed her arms and asked me what made me think I might have that! And when I mentioned some other things that I'd read, she laughed, asked me what websites I'd been looking at, and talked about "quackery"!

    I think my most immediate worry is to do with the Lansoprazole and the inflammation in my oesophagus, I've been told to stay on a double dose for the next couple of months, in the hope that this will heal the inflammation, and I am due to have a further gastroscopy at the beginning of August. From everything I've read, and what people have said on here, it certainly seems highly likely that the severe acid reflux problems that I was experiencing prior to taking the Lansoprazole were due to low levels of stomach acid rather than high levels. I would very much like to come off PPI treatment as soon as possible and deal with the matter in a more natural way, so my dilemma is: do I follow the recommendations of the specialist (and stay on the double dose) until I have my next gastroscopy, or do I try to deal with the problem in a different way and possibly even forego the gastroscopy in August? I just don't know!

    What I'd really like to do is put together some sort of step-by-step action plan to follow. For example, it seems clear that I need to be taking certain supplements and would probably also benefit from going gluten-free, but if poor nutrient absorption is an issue (due to low stomach acid and the Lansoprazole) should I perhaps consider getting the oesophagitis and stomach acid issue sorted out as a first step?

  • Steve -

    "And when I mentioned some other things that I'd read, she laughed, asked me what websites I'd been looking at, and talked about "quackery"!

    Here's your comeback for the next time she tries to belittle you trying to help yourself

    "I have taken advice from ThyroidUK, a thyroid charity recommended by NHS Choices as a source of information for thyroid disorders. I think it's highly unlikely that NHS Choices would point patients in the direction of sources of quackery, don't you?"

    Smile and think 'up yours'.

    Unfortunately, a great many members here have GPs and endos who know diddly squat about hypothyroidism, even less about Hashi's, and have had to resort to learning about our condition and helping ourselves.

  • stevenotts some links re low stomach acid and please don't panic as they're easy to read:

    scdlifestyle.com/2012/03/ho...

    scdlifestyle.com/2013/10/4-...

    scdlifestyle.com/2012/06/hy...

    scdlifestyle.com/2012/03/3-...

    chriskresser.com/what-every...

    chriskresser.com/the-hidden...

    chriskresser.com/more-evide...

    chriskresser.com/how-your-a...

    chriskresser.com/how-your-a...

    chriskresser.com/get-rid-of...

    I've had a gastroscopy that showed acid reflux and a hiatal hernia and was told to take PPIs which I refused. This procedure can not tell if you have too much or too little stomach acid, as we age we produce less.

    I was sneered at by the GP, everything I said about changing my diet was rubbished by him. They hate informed patients.

    You can't suddenly stop PPI's as I understand it, it needs to be done very slowly.

  • This is particularly interesting!

    pharmaceutical-journal.com/...

  • Thank you for those links which I shall look at later.

    For the moment, I feel inclined to follow to follow the course of action recommended by Clutter below and carry on with the treatment plan proposed by the specialist, in the hope that this will heal the existing inflammation. I would then be looking to gradually ween myself off the PPI and follow one of the protocols for dealing with low stomach acid from then on.

  • Stevenotts,

    Some hypothyroid patients with reflux may be incorrectly diagnosed with high instead of low stomach acid and incorrectly prescribed PPIs. However, your gastroscopy has shown inflammation in your oesophagus and the PPI you have been prescribed is to reduce the acid which has caused inflammation so your oesophagus can heal so I would continue on your specialist's treatment plan.

    As PPIs reduce stomach acid which makes it harder to cleave nutrients from food and your vitamins and minerals are already low you may want to supplement to avoid becoming deficient.

    Calcium is deficient. Your GP should prescribe calcium and continue to monitor calcium level to ensure it doesn't go too high.

    VitD is insufficient. 75-200 is replete and most people are comfortable around 100. I would supplement 10,000iu D3 daily x 6 weeks and then reduce to 5,000iu daily and retest in 3-4 months.

    B12 388 is probably sufficient but it won't hurt to supplement sublingual methylcobalamin to maintain levels.

    Folate is low in range so either supplement 400mcg folic acid or take a B Complex vitamin which contains folic acid.

    PPI, VitD and calcium should be taken 4 hours away from Levothyroxine and folate should be taken 2 hours away from Levothyroxine.

  • Hypothyroidism and gut issues - just take your pick of any of the links.

    google.co.uk/search?q=hypot...

    We usually have low acid due to hypo (low) and everything slows down until we get onto an optimum (which means we feel well with no symptoms). We have to read and learn and don't let doctors attitudes make you feel you know less than them, when in fact our knowledge expands as we ask and receive responses.

    thyroiduk.org.uk/tuk/about_...

  • Steve. You may find, as I did, that after your course of PPI's, correcting your medication plus sorting mins and vits will help to lower your propensity to acid reflux. I found mine was worse at night after eating chocolate and drinking tea. There may be things you know that set you off. They say you should not lie down for a couple of hours after eating and, I have read, due to the design of the tum, it is best to sleep on your right side... As Cinnamon says, you should wean yourself off PPI's slowly to avoid a rush of stomach acid.

    Seaside's brilliant comeback to your doctor should be committed to memory. If the daft bat doesn't know that Hashimoto's will eventually turn one's thyroid to stone, then it's your duty to educate her. (Or you could just poke her with a stick and suggest she takes herself off to a nunnery).

  • As you say, Steve, I'm also hoping that sorting those things out and then following the protocols for low stomach acid will help with the acid reflux issues. And, funnily enough, I'd already found that sleeping on my right-hand side improved the situation... though I had realised that it was due to any anatomical reason.

  • shame she did not test ferritin because its likely that is low and preventing conversion of t4 into t3

    taking lanzoprazole blocks absorption of ferritin and vitamins and its more likely you have low not high stomach acid ...symptoms are the same

    increasing thyroxine is of no help bcos it makes you more toxic as your body cannot utilise it

    go back and request ferritin is tested

    that you are given liothyronine instead of levothyroxine

    start now taking at least 2000mg vit c in divided doses

  • I shall be contacting my GP tomorrow about getting my ferritin tested, as you and others have suggested.

    I've just started taking a few of the key supplements that have been suggested here and elsewhere, including vitamin C at 2000 mg per day. Hopefully, I'll start to feel some benefit in due course.

  • vit b12 needs testing too and do not take any iron or vit b at all till after the blood is drawn or it will skew results

  • I had B12 tested in March:

    Serum vitamin B12 = 398 [190 - 800]

    Do you think I need to have it done again so soon, or shall I simply supplement in the meantime, as others have suggested?

  • no sorry i missed that ...just supplement with both b12 and compound vit b no need to retest

    its very likely ferritin being low thats the culprit

    it needs tobe at least halfway in its range

  • Thanks!

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