struggling bigtime(newbie)

Hello everyone. Been reading stuff here for the last 6 months and hoped I would never have to post. But here i am. I have seen the wonderful help and support this forum have given folk.......so hence thats what im here asking for . This is an overview to keep it brief. Thankyou for reading this.

I was diagnosed after many months of feeling quite ill with major hypothyroid symptoms in April 2016....told i was borderline at tsh 4.7. This Doctor reluctantly gave me 25 mg levo saying she had never had a patient with symptoms with that tsh.....told me to wait 8 weeks.....i came back and was told my tsh was 2.2 . Although i was still symptomatic but less so, i took her instruction to be retested in december...5 months away! I didn't know much about it all unlike now.

Anyway i wasn't really well and bit the bullet and saw another doctor who i had had a good relationship with over an eye issue. We embarked on the hypothyroid road of 25 mg increases to see where we got to. At least he listened and by then i was reading how this was supposed to work. I never really became well but compared to how i am now i was functioning better .I think i asked him to do a t3 etc before i increased to 75 mg.....results then were tsh 2.7 (0.27-4.2).. t4, 15.7 (12-22)... ft3 4.1(3.1-6.8). I'll leave the rest for the moment and just post the current results.

One thing i will admit to is that because i drink wine daily I have increased liver enzymes although the doctor dosent think its a factor in all this but its got to be in the equation.

Anyhow, when i increased to 75mg my body had a hard time adjusting but i kind of settled but into a very unstable existence. When i increased to 100mg levo 9 weeks ago i just felt worse and worse and worse...get the picture? I honestly felt so much worse and quite poisioned. All the symptoms which i had to begin with were here with a vengence.....one particular nasty which had been creeping in bigtime was breathlessness...even when doing little.. The fatique and my whole being is at such a low ebb i can barely function around my home....muscle pain, weakness fatique breathlessness, legs that won't work etc etc .

So and this is where i would love some help with these results overall and in dealing with my doctor...

.Cos 2 weeks ago i went to see the nice doctor who had been supporting me to get to a tsh of 1 and who i thought was listening ....but in that consult when i told him how things were since being on 100 mg he proceeded to say he thinks its my MIND making me tired and not my thyroid. I wont write any more on that except i have to ring him to discuss results. Depending if my t3 is ok or not it may change the "way" im managed. So if its still low ill maybe be offered move levo.....which would mean more possibly unconverted stuff swirling about doing nothing if im not converting or if its good, treat me as a patient with mental problems....serious stuff to me.

So here they are

tsh 1.1 (0.27-4.2)

T4 16.6 (12-22)

t3 4.3 ( 3.1-6.8)

SERUM FERRITIN 62 (13-300)

IRON 14.6 (10-30)

TRANSFERRIN 2.7 (2-3.6)

Percentage iron saturation 21.9% (30-40) LOW

Just would love some input to see if others see anything with alarm bells here . Any advice is appreciated.

Thanks for listening :)

11 Replies

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  • Hi - welcome to the forum. Whilst on levo only most people feel better with FT4 in top quarter of range and FT3 in top third. On that basis you still have capacity to increase your dose, however it appears that you are struggling to do that. That is normally caused by deficiencies in the nutrients that are required to support the conversion and use of thyroid hormones. The most important ones are vit d, vit b12, folate and ferritin. Several of your symptoms could very well be caused by these. Certainly the results you have given show, I believe, that you have iron deficiency anaemia - has your GP commented on your saturation and done anything about it? That could certainly cause breathlessness. Do you have results for the rest? If not then ask your GP to test or alternatively I am sure you have read many times about private testing with Blue Horizon or Medichecks. If you do get results then open another post to seek specific advice again.

    Many of us have food intolerances - typically to gluten, some also dairy, and such issues can cause absorption problems. Many find that a strict gluten free diet leads to improvements, but it needs at least 3 months to show maximum effect.

    It does take a while and commitment to feel better - sometimes I feel that I must rattle when I walk due to variety of supplements! - but it will happen if you stick at it.

    Gillian

  • many thanks for your reply Gillian.....i only rang for the results today and was told they were normal....when i asked for the ranges the receptionist said she would print them for me to collect. I was surprised to see that saturation result. As you say, they all seem low and i had never heard of the percentage saturation before.........shows how important it is to actually see the printed results. Breathlessness has been one of my symptoms since the beginning.....going away for a while then returning more significant......

    I had b12 done before and its fine as im supplementing......a few months ago i got all those done above and all were similar except the saturation one wasn't mentioned when i spoke to my doctor on the phone for the results. Apparently the practise does not do vit D as its too expensive.....folate was 13 (4.6 to 18).

    I think i need to decide if trying to get the deficiencies sorted is the first step rather than increase levo. Maybe the iron factor is contributing to much of my ill health. Even from the beginning. Thanks for the input regarding the tests. I'll have to get the D done privately unless i see another doctor who will agree. I think i have lost faith in the one i'm currently seeing anyhow...... thanks again. Ann

  • Hi mythreecats, it is essential that your cortisol and ferritin are in proper range to help your T4 convert. That's what is so difficult for people who are already ill to accomplish. I've just been learning how infection can interfere with ferritin. I don't see a B12 result and B vitamins are another essential. It's so easy to fall into a black hole when your metabolism drops. Usually digestion falters and we soon become not only deficient but malnourished.

    Increasing ferritin might help but reducing your levo might be necessary until it's higher in range. Taking betaine hcl with meals will help break down amino acids and minerals. Supplements of complex b vitamins and vitamin C and B12/folate and how is your vitamin D? I posted something about SIBO a few hours ago which I think anyone on Levo should pursue since it may be the basis for not making headway with your treatment.

    stopthethyroidmadness.com/l...

  • hello Heloise. Thanks for replying and the advice. My B12 was over 900 when done a few months ago and I still take a sublingual. I was thinking that myself about the levo.....if its going nowhere because of poor conversion it could be making things worse...... I could address the iron situation to see if it helps.

    As i said in my first post I was told they don't test vit D as its too expensive. I have started D3 4000 iu but agree with saggyuk. its ridiculous. I won't know if im doing it safely unless im tested. The betaine hcl sounds good advice....im assuming holland and barrett eg will have that. Thanks.

  • It's difficult to understand about the cost for a 25OHD test when almost all over the world you can have it done yourself. You could go to the vitamin D council and discover that yourself but perhaps your GP was confused. How about getting sun which did not work for me, but then neither did taking five different forms of vitamin d. There is definitely more going on.

    There is also something going on with T3 and the sudden disappearance of it. I do believe in conspiracy theories but as far as I have seen here is that people have been able to obtain NDT and maybe you can look into that.

  • Hello Heloise...been a while since this post so hope its ok to ask these questions.

    I'm just piecing together info to write a good letter to a new gp and a plan of action to take to get them onboard in helping me...... i will be seeing her on tues...hope you see this before. Im trying to make it consise and my head is spinning from it all.

    I was assuming that because i had possible unconverted T4 because of not converting properly that this was why i felt so horrendous when i went from 75 to 100 levo( not that i was in full health before). Another member suggested that from my results I probably didn't have enough T4 to cause rT3 and was undermedicated, and the reason i have found it difficult to increase is because of nutrients or high or low cortisol. Just as you suggested.

    However, does this mean that whichever way its looked at, its a conversion issue.? It seems that unless I start converting I cant raise my Levo and I need all those other things in place to convert. Is it even possible to feel better on a lower dose if i'm converting better? I have reduced to 75 and am taking ferritin now . I don't feel as poisioned and energy is a bit better overall which kind of suggests excess T4 doing nothing, but i honestly don't know. I know im far from well. I will address the cortisol etc . Maybe she will test it for me. I want to have a plan of action to suggest to her. Would it be feasible to suggest getting all those other things in place and then increasing paying more attention to the fT4and fT3.....If my FT3 never goes up would that indicate adding T3?...Way ahead of myself there.

    thanks

  • hi there - WHAT - your docs say they don't do vit D tests - really. Change surgery then, I've never heard of such a thing!!! So they can decide what they test and not test based on cost regardless of whether someone is really ill and require a test???

    Vit D is also processed/formed in the liver so maybe even more important for someone with possible liver issues.

    Yes, you will need a full blood count to see what's really going on with iron. Also you must get your B12 retested to see if actually okay and levels still optimal as B12 deficiency can mask iron deficiency and can cause higher ferritin etc.

    Not meant as a lecture as many of us do things that aren't good for us (I smoke etc) but I have read that alcohol every day can put a lot of pressure on livers etc and even just stopping for a day in between (two days a week) can make a massive difference as can give liver a chance to rest from having to process it continuously

    Also, in regards to vit deficiencies, have you any stomach issues that need resolving or do you eat a healthy diet or just eat enough?

    How long before your blood test did you take your last dose of meds?

    Hope you feel better soon :-)

  • hello saggy...thanks for the reply .I take a sublingual b12 each day and it was top of the range back when we actually did these tests. Folate was 13(4.6-18). The rest of the results were as above except for vit D. Its crazy isent it. My doctor wouldn't have done any of those tests if i hadn't asked myself . I consider it good advice about the alcohol not a lecture. It's a habit and a bad one and not helping me at all.

    I don't think there are stomach issues.....i have a lot of acid reflux and am vegetarian but like my food. I left a full day before blood test...didn't take the levo until after my blood test in the morning as advised from here....ta

  • Okay, well it's unlikely to be B12/folate messing with iron results if you're still taking and folate seems fine.

    Acid reflux is a symptom of stomach issues so might be worth a look for food intolerances even if just a six week elimination diet just to check if makes any difference.

    If you're vegetarian, you might want to double check if getting enough proteins and healthy fats and amino acids as deficiency in these can also cause a whole host of issues and is especially important for livers. Protein deficiency will also cause weak and painful muscles and breathlessness so well worth checking out. You could use a site like cronometer which tracks all nutrients and vits and everything in your diet to see if anything major pops up. It's a bit of a faff to get it started the first couple of days but then becomes easier and only need to do it for a few weeks to get a fair idea.

    Yes might be worth paying for a vit d test as not one you want to overload in. Maybe check your cortisol levels at the same time. Might also be worth having a quick check of glucose levels - sometimes it's best to recheck and rule out everything one by one to make sure all optimal or change things to improve if not :-)

  • Just saw this which gives a few smaller tips on helping livers to get started with even just like having alcohol with food and what else your liver requires. It's at least easy to read and not medical :-)

    theguardian.com/theobserver...

    And below just a couple of easy to read links re vegetarian diets and protein deficiency or things to make sure you get:

    livestrong.com/article/6059...

    mayoclinic.org/healthy-life...

    Also bear in mind that soy products are considered bad for your thyroid function if you are eating a lot of soy fake meat stuff. I do know that quinoa and buckwheat are considered whole proteins and include all 9 amino acids you must get from dietary intake so might be worth adding things like these to your foods if not included already.

  • thanks so much for that saggy....i,ll devote time to read it later. Just trying to stay above water at the moment.The stress of having to speak later to the doctor who had me so upset at the last consultation doesent help. I want to hear his opinion on the low saturation iron and tell him i want to reduce to 75 levo until i get the vitamins sorted and that from my results it doesnt look like good conversion. I have already started with some spare tabs from before.

    I am hoping to see another doctor when she comes back from holiday but I want to hear what this one says and i also will find it simpler for him to change the prescription at this point. If he does. Because they can't feel what we are feeling its so easy to be dismissive of a persons suffering....i,m so glad for all the information i have got from this forum. And so sad to see so many others treated badly. Thanks again saggy for the information.:)

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