'Borderline abnormal' TFT - how hard should I push for further action, incl. trial of levothyroxine?

[flow]

Hi all, I'm new to this forum and to thyroid stuff, and I'd really appreciate some opinions... (And I'm sorry this is long, but I don't really know what may or may not be significant, so I'm including lots of stuff!)...

I went to my GP about a month ago because I had had a couple of months of feeling *really terrible*. I haven't been feeling actually *well* for a long time, but I developed a lot of new or more extreme symptoms, including:

- Extreme tiredness/exhaustion

- Rapidly worsening joint pain (I have arthritis, but the pain has got much worse, especially in my legs/ankles and wrists) and feeling like I have been run over

- Pins and needles in my hands, wrists, ankles and feet, and weird twitchy feelings in my legs and groin

- Finger-tips going numb

- Feeling very cold

- Constant nausea (but no actual sickness)

- Constipation/feeling bloated and blocked

- Blinding headaches

- Breathlessness on very mild exercise

- Feeling a bit drunk - blurry and unsteady

I have also had some long-standing symptoms:

- Constant thirst

- Dry skin

- Night-time sore throat (every night, usually gone by morning) and chronically inflamed sinuses

And there are other weirder symptoms too, like going numb up the right hand side of my scalp behind my ear and onto the top of my skull (!).

Luckily, my GP has taken me reasonably seriously, and has tested me for various things over the past couple of years, and ran an extensive set of blood tests recently. These showed the following low or borderline results:

TSH 4.1 (range 0.2-4.0)

fT4 11.8 (range 11.0-22.6)

T perioxidase antib 45 (28.0-60.0)

ferritin 16 (15.0-290.0)

vitamin D low (I've lost the print-out, but the GP has told me to take supplements)

cholesterol slightly high: 4.6 (target <4) and LDL 2.7 (target <2)

I have had previous thyroid tests that showed a TSH of 4.5 (Mar 2011) and 7.1 (Mar 2005) and my fT4 has been "at the low end of normal" (words of another GP in our group practice). My fT3 has never been tested.

I have had quite a lot of investigations over the years, so other problems have been ruled out - e.g.: mammogram normal; not diabetic; liver function fine; MRI of sinuses clear; sleep apnoea ruled out; allergy tests show only a few sensitivities, but not to main daily possible allergens (e.g. to hamsters but not dogs!)... I know at least some of these docs think I am a hyperchondriac, but I also know something is *wrong*... It actually feels like my body is slowing breaking down.

My situation now is that I am on iron and vit D supplements (only for 3 weeks so far), and I have repeat blood tests due in about 10 days. At this point, my GP will decide what to do - whether to treat me for hypothyroidism.

There has also been some talk of a trial of levothyroxine if my test results are similar to what they seem to have been - i.e. 'borderline' rather than clearly hypo. But I get the feeling the GP isn't keen, so I want to prepare myself and form my own opinion...

I'd be interested to hear other people's experiences and opinions. Particularly, I'm wondering:

- Do I sound hypothyroid to you, based on my symptoms and/or test results?

- Do people think a trial sounds like a good idea?

- Are there any reasons why I *shouldn't* have a trial?

- Is it worth pushing for (a) a fT3 test and/or (b) a referral to an endo? And if so, any tips for how to get these?!

Thanks in advance to anyone who feels they'd like to comment...

[boobookitty]

Hi Flow,

Personally I think you are hypo and I was diagnosed with a TSH of 5.8 and a FT4 of 11.6 (the . no may be wrong !).

I argued my case by saying that my results were constantly going downhill and what was the point leaving it if the thyroid was clearly failing.

Well I suppose the bad side of getting a trial would be if the GP took it away afterwards and you felt worse but I would just ask for a trial.

Also, once you get your ferritin up you will feel better, I think being anemic is a different tiredness to being hypo and in some ways, worse !

Hope this has helped a bit anyway !

[flow in reply to boobookitty]

Thanks boobookitty. I think one of the reasons the docs wanted to give it a bit longer before treating me is that my TSH could be seen as getting better rather than worse, i.e. 4.1 now, 4.5 in Mar 2011 and 7.1 in Mar 2005. No-one seems to be able to explain why I have been feeling worse this year and *so* much worse over the past 2-3 months.

[galathea]

Yep you are hypo and would be treated in almost every country in the world with a tsh over 3. Except the uk. Push for a trial of thyroxine.

But your ferritin is on the floor. You need to get it up to around 70 or so. It's really important to get it higher because thyroid hormones can't be used with low iron.

G xx

[flow in reply to galathea]

Thanks galathea. Yes you're right. I was cross about my ferritin, because unfortunately my regular GP was on hol when I got my blood test results, and the guy I saw instead didn't even notice! Luckily, I'd asked for a print out of my results, so I picked up on it myself, and confirmed with my regular GP when she came back.

Can you tell me any more about why thyroid hormones can't be used with low iron, please?

[galathea in reply to flow]

Yes, this is taken directly from the Tpa website,,,,, there are references provided on there,

An article published in the May 2003 British Medical Journal showed that patients with low ferritin, but normal haemoglobin and haematocrit, have fatigue, that is reversed by iron treatment.

Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (1-4). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (1-4)). See also Iron supplementation for unexplained fatigue in non-anaemic women: double blind randomised placebo controlled trial (5)

tpauk.com/articles/2678-why...

[flow in reply to galathea]

Thank you, very useful and interesting

[PoppyRose in reply to galathea]

Hi Galathea,

Sorry to digress a little but you state ""It's really important to get it higher because thyroid hormones can't be used with low iron. "" do you know why this is? Is it because both conditions make you feel tired etc...?

I have just pushed for a review with my GP and although he wouldn't increase my Levo he reluctantly gave me Iron/Ferritin because he now notices results showed a dip in tests back in July!

[Jackie]

Hi You certainly need a Free T3 test for a proper diagnosis.Ask your Gp if he can do one if you pay , around £ 10. failing that you can get one done through TUK and Blue Horizon. They are TDL the same Lab as all the private hospitals use so, are well known to any Lab doctor you show them to ,as , you may need T3 on a scrpit. D takes a long while to improve, about 3 months in the blood so, is normally only tested 3 monthly,Treatment is usually for life. however before starting treatment you need a calcium blood test. They strongly effect each other and calcium out of range is lethal. You also need follow up calcium tests. because D is a hormone it comes under the remit of an endo.If the Gp not able to sort you out then I would ask to see an endo. however, like all people there are good and bad endos so, vital you do the research first. CV`s and asking people. o not just go by a Gp`s choice.I agree you need iron but Gp1s usually wait for several low readings. You can safely DIY, my endo likes Holland and Barrats sachets, less side effects and well digested. it takes quite a while to improve iron levels. makes sure you have had U` sand E`s done for kidney function. You probably have as usually the first bloods done for anything.Your cholesterol will improve when your thyroid is correctly treated. in the mean time try to eat porridge and apples every day. They actually lower the cholesterol as, well as stop having most things that are bad, especially cheese, cream and butter. I would try and get the thyroid sorted and then see how you are. it does take many months with frequent blood tests and dose increases as a very potent drug and must be done safely. I hope this helps,

Jackie

[flow in reply to Jackie]

Thanks Jackie. Whereabouts are you? I understood that it isn't possible to get t3 on prescription in the UK. Am I wrong?

I've got recommended supplements for vit D3 and 'gentle iron' (iron biglycinate) already. The GP suggested H&B but I went to my local whole food shop, where I have been shopping for 20+ years and trust the guy to give good advice. I've never taken supplements before, so I'm a bit wary! No-one has mentioned calcium levels, so I'll check those out... I have 5 pages of printed out blood test results, so maybe they've been checked already...

And thanks for the porridge and apples tip. I like porridge... I'll make some for my breakfast soon!

[Jackie in reply to flow]

Hi , You can certainly get a T3 script form your GP but you may well need to prove it by having a lowish FT3 result. With an endo often easier.I live in Warwickshire but anywhere, my difficult Gp will often refuse to give me drugs requested by consultants but actually offered me T3. Armour or Erfa which contain T4 and T3 are normally only on a private script, much cheaper than T3.

Normally on treatment thyroid T4 and FT3 should be in top third of range but a lot of us find we need T3 to be near the top of range.You symptoms could all be hypo made worse by low iron and low D ( a hormone) When I first saw an endo my D on the floor. I had a lot of aches and pains, had to crawl upstairs and had osteomalacia ( adult rickets) That is why I said that the first thing to do is sort out the thyroid, that + iron and D should make things clearer and everything could be fine. it does take a long time to get the thyroid right.Only then look elseware, it will also give you and the docs. a clearer picture. There are so many symptoms of hypo.

I hope that helps.

Jackie

[flow in reply to Jackie]

Thanks again Jackie, that's good to know. I'll ask for a Ft3 test and see where that takes me

[mari_lou in reply to Jackie]

hi im new to this site ive had my thyroid removed and im always tired and my knees hurt including sometimes my legs hips ect .my doc never tests me when i go to him , im on 150 levothyroxine each day which i have been on from the day of my operation four years ago. im learning alot from this site ,im a bit concerned as i have hardly any calcium intake not liking milk or many dairy products .is there anywhere one can go for advice about all this ?

[lizzie1]

Your readings are very similar to mine although I did test positive for antibodies as well. Two of my worst symptoms have been my balance and twitching muscles. My doc started me on a trial of 50 mcg levo and I began to feel worse. Have been battling on with levo since May this year. Have just seen an endo who said that I was to increase levo to 75 mcg but she did acknowledge that some people cant tolerate it and if I continue to have problems she will try my on T3 in January.

You might find that you improve with levo plenty of people seem to. Your ferritin is low but can be resolved with iron.

None of the GP's I saw were keen to treat me as i was borderline but only you know how you feel and you know when you are'nt 'right'. I still have isues with taking medication, I keep thinking should I be on it but I know that i have to try and get myself well.

Just wanted you to know you are not alone.

x

[flow in reply to lizzie1]

Thanks lizzie. I am confused about the antibody results. The stuff I have read (online) seems to suggest you shouldn't have *any*, but my results seem to give a 'normal range', which suggests what I have read (or understood!) is wrong. Are you able to tell me any more, or point me to a good source of info, please?

My balance has been odd - generally alright, but then occasionally I get a sudden 'swooping' feeling, like I'm on a roller-coaster or the ground has dropped away beneath me!

[lizzie1 in reply to flow]

Hi flow - sorry am not an expert re antibodies. I did a private blood test which showed i had thryroglobulin antibodies (351) which suggests an auto immune thing going on.The endo said that my tsh results were not bad 6.76 and 5.33 but she became a lot more interested when i showed her the antibody reading. She also said she was not worried about a low FT4 as she said it is normal for some people. This seems the opposite of what you read.The one thing which has improved with the levo seems to be the twitching, not gone altogether but has reduced a lot. I get that swooping feeling, and feel like i am on a rollercoaster. Am hoping T3 will help, if not will try NDT.

You do question yourself and wonder whether being subclincial can cause all these problems but it does seem plausible.

[flow in reply to lizzie1]

I do definitely question myself! And it's not helped when docs say things (as the substitute one did recently) like "One must never under-estimate the power of the mind on one's physical wellbeing"! (Hmmm, No Sh*t Shirlock!)

The word 'sub clinical' is weird though, isn't it? Surely it suggests your thyroid is low but you *aren't* having any symptoms?! If/when you get symptoms, surely that can't be considered 'sub' clinical any more... But it still seems to be!

[flow]

Is there anyone out there who could comment specifically on my *symptoms*?

Are any of them definitely low thyroid symptoms, not explainable by anything else? My GP seems to be saying that most of them could be related to my low iron and/or vit D rather than my thyroid, which is why she's treating these first.

Thanks everyone

[boobookitty in reply to flow]

Hi again !

I have just read the question again after a good nights sleep and since you have also mentioned being thirsty please get your fasting glucose tested to rule out diabetes. I have had it done and its just the same as a normal blood test apart from you fast from 11pm the night before. A normal blood glucose is between 4-6. Anything over 6 is too high.

Regarding antibodies, I think everyone has a presence of them naturally which is why it is over 60 when it starts to be relevant.

Also, symptoms.... from your list I can only say with my knowledge that tiredness, cold and constipation are definitely symptoms but i do not know enough about the others so do not rule them out as definitely not hypo symptoms.

[flow in reply to boobookitty]

I have had my fasting glucose tested already boobookitty, thanks... In fact, several times, because of thirst and because my bro has type 1 diabetes. But it's fine. One less thing to worry about...

[wobblybee]

I saw a GP yesterday, specifically for repeat antidepressants, I've been told I have

Cerebellar Ataxia. The cerebellum is distorted but I don't think that covers all my

problems. I have suffered most of the symptoms described above, at the

moment I have tingly numbness from my nose to below my mouth, an odd thing

is feeling my tongue is in the way, I frequently bite it at the back. I asked

yesterday for a Thyroid test, after listening to my list of symptoms the GP said

yes they could be linked. I went on to speak about my daughter, I know all about

confidentiality and how I shouldn't interfere but, she mirrors a lot of the symptoms

previously described and is very unwell, her wedding is in February, adding

more stress! She had a test a while ago and was told levels were 'normal', I'm

trying to convince her to go back, particularly after my chat yesterday, since she

likes this GP.

[helvella Administrator in reply to wobblybee]

Have a read of this:

ncbi.nlm.nih.gov/pubmed/231...

Does it make sense for you?

[flow in reply to helvella]

I assume with this, as with other forms of Hashi's, thyroid antibodies would test positive?

[helvella Administrator in reply to flow]

I am no expert - and do not know for sure about blood serum levels of antibodies. Nor, indeed, whether you'd find Thyroglobulin and Thyroid peroxidase antibodies - but whichever, they'd be in the cerebro-spinal fluid (CFS) and that would need a "spinal tap" to get a sample.

Have a look here:

orgsites.com/fl/hashimotos-...

[wobblybee in reply to helvella]

I'm stunned! Numerous blood tests couldn't find cause. I'll definitely

follow this up, many thanks!

xBeryl

[flow in reply to wobblybee]

I'm sorry about your diagnosis, wobblybee. That must be very worrying for you. Best wishes to you and your daughter.