Levothyroxine for years - no effect. Confused and after general advice.

[rodney69]

I am one of the millions of people who have hypothyroidism. (Hashimotos). I was diagnosed at 28 despite being ill for 2 years prior, I’m 38 now and have been taking Levothyroxine for over a decade. I get thyroid bloods done at the gp and they always come back “within range”. At no point during my decade of taking Levothyroxine has it improved any of my symptoms. I went from being a very fit/healthy person to being someone who literally doesn’t function. Crippling fatigue every day and night, none refreshing sleep, heavy headaches, the feeling where your limbs and head are too heavy for your own body, foggy brain, confusion, unable to concentrate, thinning brittle hair, zero sex drive/libido (like literally none), constipation/digestive issues, low bp, slow heart rate .. I mean.. these are just a few of the symptoms faced every single day. I’ve told G.Ps many many times that I don’t think my Levothyroxine is working and all I get is repeat bloods (within range). At a point in life now where I’ve had over ten years of this and am desperate. I work for an emergency service and have no idea how I’ve not been sacked after all these years! It’s just not funny any more. An attractive young lass, (with giant bags under my eyes!) can’t form bonds or relationships of any description as my whole body is depleted of energy and life. Like being an outsider and looking in on your own life. (A bubble). Been round the referrals system however many times, keep being told they doubt this and doubt that because I’m young and appear healthy (visually).. never been referred to an endocrinologist though. My 20s into 30s has been wiped away by this “thing” and to be honest due to feeling so poorly every solid day I don’t have any treasured/cherishable memories from this entire time. Too exhausted to even socialise now I don’t even go out, don’t drink, don’t smoke. Eat healthy/gluten free. Tried every which way to take Levothyroxine.. empty stomach bed time, empty stomach morning an hour either side of anything, no milk no coffee no wheat/gluten. Every suggestion made has been tried. It just doesn’t work in my body! No I don’t have CFS or depression/anxiety .. (any depression I may feel is due to my complete depletion of energy and the life being zapped away through in optimal treatment for Hypothyroidism). Basically need to try T3. Feel let down by the NHS for keeping me poorly. Depriving life for something simple. I pay National insurance like everyone else. Been left so long on monotherapy T4..fear it may have caused damage to my heart and brain. (Persistent inverted t wave was discovered and brain is in a permanent cloud!) Off I go tomorrow to the G.P for my thyroid bloods! .. Guess what. I’m wasting my time. Can anyone inbox a good private endocrinologist in the North East of England’s please who knows about treating the thyroid properly? Preferably one likely to offer a trial of t3. I ordered some online in desperation a while ago but abandoned the idea when it came to the method of payment.. seemed a bit dodgy! someone in Ukraine wanting a money gram transfer for it .. hmmm!! Yes I changed my mind as really have no clue what I’m buying it could be rat poison. Alternatively can anyone inbox any safe reliable sources for t3. Anyhow I posted some results on here last year from a private blood test, showing low folate of 2 : (2.9) raised antibodies in the hundreds (hashis), My TSH looked ok. I’ve had several other tests and referrals since then.

Basically out of all the tests since then, my thyroid ones were “within range”, The ones that stood out were :-

Autoantibody level :-anti nuclear factor level -1:80 homogeneous

ENA Types :- RNP Antibody level 5.7 (0.0-10.0)

Ferritin 11 - (13-300)

Haematocrit 0.364 1/1 (0.37-0.47)

I’m confused now.

Taken all the advice from my post last year. Does anyone have any clues about the above? I know the ferritin and folate one means probably low iron which my G.P is aware of but so far hasn’t done anything with it.

[Marz]

healthunlocked.com/thyroidu...

In your last post in the link above - you had amazing advice from everyone who replied. Your low Ferritin is something you can do something about yourself by following the advice from SeasideSusie last time. As others have said if you wait for the Medical profession to step in - you will wait forever.

Are you still on 75mcg T4 - SlowDragon suggested in your last post that your dose was too low and of course that would affect the uptake of important nutrients - especially with Hashi's ...

[rodney69 in reply to Marz]

Hiya yes I’ve been taking gentle iron every day with vit c as per last years advice. It appears to have improved my folate. Folate went from 2 to back within range (only just) but my ferritin has gone from 13 within range down to 11. Iron is making me more bunged up with stomach cramps so I’ve been prescribed these orange powder sachets from the doctor to help me go to the toilet! Yes still on 75 of the levothyroxine, doctor said I was within the range therefore didn’t agree I was needing an increase. B12 is absolutely fine also right in the middle of the range. Been completely gluten free since my last post which is quite a while. I take vit d supplements also every day. I’ve stuck ridgidly to the advice. I’ve not noticed any improvement in feelings as yet. I note that on the last advice it was mentioned I was under medicated. Is that because the tsh didn’t show that it was under 1? Or what else can I show the doctor to help them understand I’m under medicated? Doesn’t seem like anything on my results is of concern to them despite feeling the way I do. Doctor regularly mentions they may refer me to the chronic fatigue clinic! I may be wrong but don’t think I have CFS! It’s so frustrating now. That’s why I’m interested in finding a local endocrinologist in particular who deals specifically with the thyroid. They may be more open to trying t3 with my t4 or at least something! .. you are right. Will wait forever for drs to intervene even with results in front of them.

[Marz in reply to rodney69]

As suggested in your last post your FT4 would be better nearer the top of the range - hence your need for a dose increase of 25 mcg to improve this level - and in turn improve the FT3 result.

CFS is a syndrome and not a specific illness. Low Ferritin - Low B12 - Low Iron - Low VitD - can also be the cause of fatigue. Wake up Doctor !

Are you taking magnesium with your VitD ? they work together and certain types of magnesium help with constipation - as does Vit C - lots of it VitK2-MK7 ?

[rodney69 in reply to Marz]

I do have magnesium but to be honest I’ve been round and round in circles with what I should be taking and shouldn’t be taking, should be eating shouldn’t be eating it’s been confusing. The only things I’ve been taking since September last year are easy iron, high strength dispersable vit c, vid d, and sublingual b12. I’ve been gluten free since my last post until 2 weeks ago G.P told me to introduce gluten so can test for coeliac. I’ve done all that and I have coeliac test today. Should I be taking magnesium too? There are so many things it’s so confusing!

[Marz in reply to rodney69]

I politely suggest you read through the last post you made as linked above and read through carefully making notes. Magnesium was mentioned then by SeasideSusie as it is needed with the VitD you are taking. Make a list rather like a shopping list and then a plan when to take your supps taking into consideration when and how is the best ... you sound as if you are a little rushed and panicky. We all have to go through this endless planning and updating in order to find wellness - I am 72 and am still learning I rattle with supplements but know how important they are - I have Hashi's too and had Gut TB - Crohns - and endured 13 major surgeries leaving me with a serious deficiency of B12. Now happily retired and have the time to help myself and hopefully help others ...

[SeasideSusie Remembering]

Ferritin 11 - (13-300)

I know the ferritin and folate one means probably low iron which my G.P is aware of but so far hasn’t done anything with it.

You absolutely must get this sorted. Your GP must do something about below range ferritin. An iron infusion would be a good idea.

B12 and folate work together. You were folate deficient before, has this been addressed, if not then it must be so that B12 can work. Your Serum B12 was pretty good last time, but that is a total B12 test, an Active B12 test will tell you what is available to enter the cells.

If your GP still ignores all this, see a different GP and make a complaint about this one.

What are your latest thyroid test results? What dose of Levo do you currently take?

It's essential that all vitamins and minerals are optimal before considering T3, and that your TSH is down to around 1 so that we can see where your FT4/FT3 levels lie before knowing if you need T3.

I don't think T3 is your answer at this stage, optimising all your vitamins and minerals is. Once these are optimal, then see what's happening with your thyroid levels.

[rodney69 in reply to SeasideSusie]

Hello thank you for your reply my latest Serum TSH is 2.13mu/L (0.35-5.5). Can I just tell my G.P I need an iron infusion? I have been taking gentle iron every day with vit c and my ferritin has dropped but folate apparently normal! The only thing the dr has prescribed me is orange powder sachets to help with the extra constipation and cramps the (over counter) iron has created. I’m going for more bloods today at 1pm.

[rodney69 in reply to rodney69]

Looks like today they are testing :- bone profile, CA125, C-reactive protein, ESR, Full blood count, Ferretin, liver function tests, thyroid, urea and electrolytes, also coeliac disease screen having been told to eat gluten for the last 2 weeks.

[SeasideSusie Remembering in reply to rodney69]

my latest Serum TSH is 2.13mu/L (0.35-5.5).

No FT4 and FT3?

When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

A 1pm blood draw wont do your thyroid test results any favours. Thyroid tests should be done at the first appointment of the day, no later than 9am, and fasting. Always advised here is:

When booking thyroid tests, we advise:

* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* Leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

[SeasideSusie Remembering in reply to rodney69]

Can I just tell my G.P I need an iron infusion?

That probably wouldn't go down well.

I have been taking gentle iron every day with vit c and my ferritin has dropped

You could say something like "My ferritin is below range which is obviously a dire result, and this is despite me taking Gentle Iron which contains XXmg of elemental iron. I understand that it can take many months for iron tablets to raise ferritin level, but it doesn't seem to be helping at all in my case, and that an iron infusion can raise it in days rather than months. Would it be possible for me to have an infusion?".

Check how much elemental iron is in your Gentle Iron. I think it may be 20 or 25mg per tablet. I think that may go down better.

[rodney69 in reply to SeasideSusie]

Hahaaa thanks I suppose my direct approach may have be a little naughty. I’ve already been on iron for many months with very little improvement. I know everything takes time! I guess I’m just frustrated by blatant the lack of interest by G.Ps (I understand where people are coming from now when they say they feel ignored. Life is dismal when u feel ill every day yet still plough through work and stuff knowing u feel fit to drop!

[rodney69 in reply to SeasideSusie]

I now have online access to my gp records so can see all my results from the go.. gained access to it a week ago and have been looking through them there is no ft4 and ft3 showing on there only serum TSH ! (Unlike the private ones I posted last year which displayed everything) .. there’s something lacking seriously!

[SeasideSusie Remembering in reply to rodney69]

I really don't understand why doctors can't see that the actual hormone levels - FT4 and FT3 - are the important tests, TSH doesn't tell them anything about our thyroid hormones. I totally despair at the lack of understanding where treating hypothyroidism is concerned.

I guess I’m just frustrated by blatant the lack of interest by G.Ps (I understand where people are coming from now when they say they feel ignored)

Oh, I totally, totally get that I've had so much ignored by my surgery in the last 18 months, I've told my kids that if I die from something related to them dismissing my concerns and not investigating then sue the pants off the surgery! I think I've reached the "not worth bothering with" age group

[rodney69 in reply to SeasideSusie]

That’s mad! I told my brother the same thing if I die it’s because the dr has not actioned or investigated anything and seem to dismiss everything because I’m young(ish). I appear healthy. I feel flaming ill inside. It’s relentless. I had a telephone appointment with the gp prior to her deciding to test for coeliac and I pointed out “ could it not be iron deficiency that’s making me feel like this?” Her response .. erm “do you suffer heavy periods?” .. I said no. She then replied “oh I doubt it’s anything to do with that then. The same day I went to see rheumatologist.. I told the rheumatologist I was fed up going round in circles and told her I already knew I was iron deficient from a private test. The rheumatologist has retested based on what I said and my ferritin came back 11 (low) sent it back to G.P and I’ve heard nothing since then. Today my bloods.. I’ll only see the nurse for that. In three years at this practice I’ve not actually seen a doctor face to face! Only telephone appointments then bloods with nurse. It’s very impersonal now I think.

[rodney69 in reply to SeasideSusie]

Just checking the gentle iron :

Vit b6 5mg

Folic acid 400ug

Vit b12 10ug

Iron (as fumerate) 17mg

Zinc 12mg

Copper 1000ug

[SeasideSusie Remembering in reply to rodney69]

That sounds more like a multivitamin/mineral. What's the brand?

[rodney69 in reply to SeasideSusie]

Feroglobin capsules gentle iron (apparently U.Ks number 1 iron supplement brand!) ..

[SeasideSusie Remembering in reply to rodney69]

The trouble with that Multi (like the majority of Multis) is that the absorption of everything else will be affected by taking iron at the same time. Iron needs to be taken 2 hours away from any other supplements and medication (Levo - 4 hours). So you'll be getting the 17mg iron but it doesn't say if that's elemental iron (it may well be). Compare that to buying/being prescribed standard ferrous fumarate which is a 210mg tablet that contains 68mg elemental iron. It's also got the wrong forms of folic acid (should be methylfolate) and B12 is cyanocobalamin and should be methylcobalamin).

It really is best to get separate supplements for whatever is needed.

[greygoose in reply to rodney69]

It's rather unlikely you need copper! Hypos are usually low in zinc and high in copper. Take more copper will make you rather ill! So, you should get your copper tested before taking any.

If I were you, I'd bin that horrible multi and buy some proper iron supplements. Or, do as everyone suggests and eat liver. Or, insist your doctor does something about your low iron.

How much vit C are you taking?

[Angel_of_the_North]

You need a full iron panel as it looks as though you have iron deficiency anaemia. Your doctor is ignoring guidelines by not treating you. You also need B12 and folate tested to see if you have pernicious anaemia - those would be enough to explain your symptoms. You probably need an iron infusion. Get an assertive male to go with you to the doctor and demand some treatment (men are listened to more than women)

[rodney69 in reply to Angel_of_the_North]

Hiya, just to let you know, I got my results from the bloods the other day, doctor been on the phone. My latest ferritin has dropped to 10 and today they have prescribed ferrous fumarate 210mg and I have to take 3 of them a day. How nice of them to finally decide after a year of actually being below range that I do have Iron deficiency anaemia, you were exactly right, thank you. They didn't test folate on this round mind so have no idea what the folate is doing right now. I told the G.P on the phone id been taking iron supplements since Aug/Sept last year and they have done nothing but give me stomach issues/cramps/constipation. GP offered no alternative, she just said its much stronger and you can use your orange laxative powders if you get constipated. Wants to retest in a couple of months. Frustrating but I suppose its a tiny bit progress! But yes, you were bang on, thank you for your reply.

[Angel_of_the_North in reply to rodney69]

Don't forget to take your iron with a least 500mg of vit C each time. If you are not on levo and therefore pay for your prescriptions, it is cheaper to get the same ferrous fumarate from Tescos pharmacy or an independent (or an internet pharmacy) than pay the prescription charge.

[rodney69 in reply to Angel_of_the_North]

yes I'm on Levo too so going to have to make a plan as to when I can fit in 3 iron tablets spaced at least 4 hours from levo on a random nights/days shift pattern. Should be fun. Thanks again

[Angel_of_the_North in reply to rodney69]

Best to take iron with meals, which makes it a bit easier. iron with breakfast, lunch, and tea, levo last thing at night. Shifts don't help though