Please can I ask a few questions before I start... - Thyroid UK

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Please can I ask a few questions before I start thyroxine?

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Sorry to post again. 3rd time this week. I am just feeling my head is a confused mess today and I could do with some advice.

Ok, I will start with all my blood work incase anyone reads this and doesn't know from my previous posts.

January 2013

TSH 4.9 (0.35-5.5)

FT4 11 (7-17)

August 2015

TSH 5.35 (0.35-5.5)

FT4 11 (7-17)

B12 - 212

Ferritin 15

Blue Horizon results January 2016

TSH 6.54 (0.27-4.2)

FT4 14.24 (12-22)

Ft3 5.37

Anti-Thyroidperoxidase abs 11 <34

Anti - Thyroglobulin abs <10.000 <115

March 2016 Blue Horizon

Tsh 7.51 (0.27-4.2)

Ft4 15.83 (12-22)

FT3 5.56 (3.1-6.8)

Anti-Thyroidperoxidase abs 10.7 <34

Anti - Thyroglobulin abs <10.000 <115

B12 477

Ferritin 34

I had a repeat done on Monday with medicheck. I took these at about 7am.

Tsh 9.28 (0.27-4.2)

Ft4 15.76

I spoke to my GP in January and he agreed I was subclinical. In March he said the same and said one more test and i will treat you before it reaches 10 as you're very symptomatic. Yesterday I spoke about the recent results and he wanted me to wait 2 more weeks, and test my antibodies again as he says my results are strange. The TSH is rising rapidly, T4 is rising too, T3 is fine and he said I have no antibodies. He was not sure whether to treat me. He then said he agreed to a trial of levo. I have to have a blood test in 8 weeks to check everything again including antibodies.

So i have been left confused about whether I need treatment or not as my antibodies are normal. I have some questions and I was wondering if anyone could answer them for me as my GP was useless.

Since last summer I had crippling chronic fatigue. By the winter it got much worse but it got worse when my son suddenly told me he was being bullied and he was suicidal. It was the worst 3 months of my life and during that time the following symptoms started..

*Chronic fatigue worsened.

*Energy crashes, unable to do yoga, housework, walk, shops without a HUGE crash that landed me in bed feeling terribly weak and fatigued.

*A main symptom was balance, like the floor was bouncing as I walked.

*In my eyes I feel like my head is woozy, when I look at things it's as though it takes a while for my head to catch up, so a woozy off balance feeling in my head too. This symptom seems worse on the days my fatigue is bad.

*No weight gain but unable to lose weight.

* In the winter I was very cold but now I seem to be unable to tolerate the humid/hot weather.

* High anxiety, agoraphobia, fear of fainting and collapsing.

* Weak thighs and arms often.

*Brain fog, poor concentration.

*Dry mouth some days.

* Very thin eyebrow hairs. No need to pluck anymore.

* At times I feel very tearful. I can also be a little grumpy and seem to have no energy to talk to anyone in the house. Very unlike me lol!

My GP checked me 3 times between November and January and put it all down to the stress of my son being very unwell with panic attacks and depression. Thankfully my son is now the happiest I have ever seen him, I gave him therapy myself and got him over everything after CAMHS refused to help him due to funding issues. I hoped as the stress passed so would my symptoms but the fatigue and crashes has been the same ever since. I may have 1 day a week where I don't crash. I have had to carry on as normal, I have 3 children, no support other than my husband but he works long hours. I feel ill and drained daily. It's like I just exist and my days are just spent at home resting between chores.

I take vitamins. I am eating a very clean diet. I am doing all I can but getting nowhere. One week I think my energy has lifted a little and the next I crash again for a week, it's so hard as a mother. My anxiety has returned that I suffered a few years ago, probably my son being ill was the trigger but now it focuses on my health and i fear being rushed into hospital and collapsing and how I'd cope now I am battling anxiety and agoraphobia. The agoraphobia has only started since being so ill, going out feeling this weak and drained is not easy as I am sure many of you know so I think that opened a back door for my anxiety to return.

Are the symptoms I have explained those of hypothyroidism? I don't have weight gain, I don't seem to feel cold. Nor do I have constipation.

I have been very worried whether it's a pituitary tumour or some kind of condition rising my TSH as it seems to be the only thing out of range on my results. I have been worried if I start the thyroxine will I end up hyperthyroid as my GP said as my T4 is good at 15.8 taking levo could tip me the other way. My GP also saying I don't have antibodies means I may not be hypothyroid, and the GP in January I called for a second opinion said exactly the same thing. My mum is hypothyroid but they said that doesn't matter as neither of us have hashimotos.

I have also been worrying is it my adrenals, do I have addisons? my GP basically didn't take me up on the adrenals. I have researched and done some tests at home. The light in the eye and BP and both were normal. I was worried can the adrenals rise TSH.

My main symptoms throughout have been the off balance/dizzy eyes feeling and the crippling fatigue. Daily, unable to do much at all or I crash and burn.

I think that's everything going on in my little head. lol! I just feel I need to answer these before I start thyroxine this weekend as for me this is a big thing. i have been so poorly and I want to get well for my children but fearing if my GP actually knows what he is doing and if we are treating me correctly.

I really appreciate all your help as I feel totally lost right now.

I have attached a photo of me, maybe someone can say whether I look hypothyroid haha. I know I look a mess and I apologise for scaring any of you

Julie

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47 Replies

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SeasideSusieRemembering9 years ago

Another idiot GP! Of course you can have hypothyroidism but not Hashimoto's. I been hypo for over 40 years, had private tests for antibodies a few times and mine always come back like yours, well under the range. My mother was hypo, she didn't have Hashi's either. There are probably quite a few members on here who don't have Hashimoto's, it's not the only cause of hypothyroidism.

I believe there are about 300 different symptoms that can be attributed to hypothyroidism but it doesn't mean you have to have all of them.

I always feel the cold more than anyone else but I can't tolerate the heat either, if I sit outside on a nice day my legs will start to burn within 5 minutes even with trousers on if the sun is on them. I much prefer to sit inside on the shade.

You have a rising TSH, very close to the magic number 10 that GPs usually want to see before diagnosis, plus lots of symptoms of hypo. With FT4 at 15.8 you have a long way to go before the top of the range to push you into hyper although it is FT3 that is more important there.

If you are offered a trial of thyroxine I would give it a go. It will be a low starting dose of around 25 or 50mcg. You will know if you go hyper and if you don't feel right just stop taking it.

By the way, your B12 is too low, needs to be 900-1000. Also your ferritin appears low but hard to say with no reference range. It should be half way through the range. What about Vit D and folate?

If you're worried about adrenals you can get the 24 hour saliva adrenal test through Genova (details on ThyroidUK's main website).

• in reply toSeasideSusie9 years ago

Thank you

Yes my GP has reluctantly started me on thyroxine. I pick them up later, I am unsure of the dose but he said low.

I had my folate tested and it was about 19 in August last year and 40 recently but I didn't realise I had been taking 2 supplements with folic acid in so was over dosing it. I have since stopped the 2nd supplement. Vitamin D has never been tested, my GP said he had to do the bone profile first to see what that showed, and vitamin D was not easy to get tested at our surgery?? I have since been supplementing it myself.

I supplement B12 1000ug a day, sometimes 2000ug. It was 212 to start with so I started taking supplements as my GP said it was fine.

The ferritin I think the range is 15-150. My ferrtin was 8 3 years ago, it's been low for over 10 years. I can't tolerate iron so I take spatone which doesn't seem to help much. It's now at 34 so it's climbing a little.

Thank you for your reply.

Julie

SeasideSusieRemembering• in reply to9 years ago

I would suggest you get your Vit D tested privately - £28 at City Assays, a finger prick blood spot test.

As Vit D is fat soluble, any excess gets stored in the body rather than pee'd out like a water soluble vitamin would. So it's important to keep it in range.

Also, when taking Vit D, it's advisable to take Vit K2. Vit D aids the absorption of calcium and K2 directs that calcium to bones and teeth rather than arteries and soft tissues.

Greenwall9 years ago

Hi Jingyd35

I'm impressed that you can get a photo on here!

I' new to all this, but have been reading lots, especially on here. From what I can gather you should treat by symptoms not necessarily relying on labs.

I would suggest taking the meds. When I started 6 months ago, the levo dropped the TSH and therefore it didn't kick the thyroid to produce T4. So, I don't think you need worry too much about hyper, and you can always stop the meds again. Suggest you start on a low dose.

High anxiety takes a lot of energy and can leave you drained. Have you considered CBT re anxiety? It helps things back into perspective, and should go at your pace for overcoming the agoraphobia. Free via GP, or on-line. llttf.com/

I wonder if you did too much activity when you felt your energy levels rise? I know it is very tempting to do as much as poss when you feel even a little better. You then get into a bust and boom cycle, and you end up worse. Try and pace yourself even on days you feel better.

I know that doesn't answer all your questions, and I wonder what others on this site will say?

Hope you feel better soon.

• in reply toGreenwall9 years ago

Thank you for your reply and the link for the CBT.

I had CBT 2 years ago and it helped, I had to go private though as the NHS were useless and put me on an 18 month waiting list. I know how to overcome anxiety and agoraphobia but right now I am struggling to apply any of it while feeling so physically unwell. I know if that got better I could easily do exposure work and get back out there.

Thanks for your reply

Julie

Greenwall9 years ago

CBT with NHS is usually limited to a few sessions anyway.

I appreciate you're in a vicious circle right now, too exhausted to deal with anxiety, and anxiety adding to your exhaustion.

I really hope you find a solution soon.

• in reply toGreenwall9 years ago

Thank you 😊

shawsAdministrator9 years ago

The starting dose of levothyroxine is 50mcg and after six weeks get a new blood test and your doctor should increase by 25mcg every time until your TSH is 1 or below. Many wrongly believe if you get anywhere within the 'range' that's fine. No it isn't. You want relief of symptoms. Sometimes, after you've been on levo for a while and still don't feel a benefit, an addition of some T3 is helpful. Many doctors won't prescribe it so some source their own.

Hopefully, you will be one of the many who do well on levo.

Remember, the earliest possible appointment and don't eat before it although you can drink water. Allow 24 hours between your last dose of levo and the blood test. Always get a print-out of your blood test results with the ranges for your own records.

• in reply toshaws9 years ago

Thank you so much.

So do you think I just have to accept I do have hypothyroidism and start thr levothyroxine? I'm only concerned because of the worried about is it pituitary issue or adrenals. All because my ft4 seems to be fine. Is tsh alone ok to diagnose hypothyroidism? My gp couldn't seek to answer any of my concerns.

I took my blood this time just before 7am. That wasn't too early was it? I usually take it before 7.30am but I did it a little earlier this time. Not sure if that is why my tsh is even higher than the test in march.

Thank you

Julie

shawsAdministrator• in reply to9 years ago

The timing of your test is fine. TSH has a circadian level, early a.m. and drops throughout the day. I think it's highest very early a.m. but we cannot have blood tests in the middle of the night

Even though FT4 is fine you do have clinical symptoms.

• in reply toshaws9 years ago

I was just concerned as T4 is at 15.7 is it risky starting thyroxine as my body is still producing it, my GP is even confused by this and reluctantly prescribed. He said he would based on symptoms but he was worried treating it would turn me hyperthyroid.

greygoose• in reply to9 years ago

Jingy, your FT4 is not fine. It's well Under mid-range. And the only reason your FT3 isn't too bad is because your TSH is pushing conversion.

But you can't keep on like that forever. There will come a breaking point if you Don't start treatment soon. Your high TSH is flogging your thyroid gland to death, and says that your gland is having a lot of trouble producing as much T4 as it does. Do you really want to wait for the Crunch before you give in and admit you have a problem?

Although, you do know you have a problem, because of all your symptoms. And all this soul-searching about whether or not to take the Levo, is just another symptom.

Why do you think it's a pituitary problem? Your pituitary is pushing out all that TSH... it seems fine to me. And adrenals? You have more chance of stressing your adrenals by not taking the Levo, than by taking it.

Believe me, with a TSH of 9.28, you are a long, long way from going hyper! It doesn't just happen over-night. And, as SeasideSusie said, if Levo doesn't suit, just stop taking it, no harm done. It's as easy as that.

• in reply togreygoose9 years ago

A very helpful reply. Thank you.

I think I've just normal very confused as to why it's just my tsh out of range. My gp hasn't helped by not understanding any of it either.

I've been worried why my tsh has jumped from 6 to 9 in just a few months.

I just need to be brave but I've such bad anxiety about starting new medications incase I have a reaction, allergy or some side effect. I've not read the leaflet and don't plan on it. My gp said it's perfectly safe with my 2 other medications and to take it in the morning.

I need to kick up the ass and some reassurance lol. My gp didn't help saying with my t4 being 15.7 he didn't want to treat incase when caused hyperthyroidism. No wonder I'm confused lol!

Julie

greygoose• in reply to9 years ago

Well, to be honest, you doctor just doesn't know what he's talking about - most of them Don't, but yours is special! lol

And he hasn't explained anything because he doesn't know anything!

Your TSH has jumped up because your thyroid is getting more and more incapacitated, and needs more stimulous to make hormone. Your TSH is pushing your gland very, very hard, as I said before.

Levo is not a 'medication' in the normal sense of the word. It's not a drug. It is a hormone. If you were diabetic, would you hesitate to take your insulin? I bet you woldn't! Well, taking Levo is the same thing. It's just replaceing what your body can no longer produce for itself.

You're confused because you're listening to a man who has no idea what he's talking about, and which goes against all you've read here. Honetly, all that claptrap about 'going hyper', it's complete rubbish! And shaws has explained it all very well below. Just stop listening to the stupid man. And you know he's ignorant because he's left you ill for so long, when all you needed were the right blood tests.

Just take your prescription and ask your questions here. If you talk to him any more, he's just going to muddle you further. Then, when you're feeling more yourself, you can do your own research, and then you can teach him a thing or two!

But the first step is just to take the Levo. Just do it.

• in reply togreygoose9 years ago

Ok I will. I have to just take that first step. I had a nasty reaction to a drug 11 years ago, on my reason I've this damn phobia taking Meds. It's so annoying.

I guess the fact my tsh is so high it's flogging my body to work so hard and I guess that's what hypothyroidism daily I feel so weak, drained and off a balance. Just to name a few.

I know my gp knows bugger all. He just didn't seem at all clued up and even went back on his word from March when he said to me one more test and he would treat if even a slight increase. I then jump from 7 to 9 and he still says he's not sure. Grrrr. I had to put my foot down with him.

Thank you for your help.

shawsAdministrator• in reply to9 years ago

First levothyroxine is not a 'drug' as such.

Our body produces 'thyroxine' a thyroid hormone naturally.

When thyroid gland is not working as it should we are given levothyroxine (a synthetic hormone) which is also 'orthomolecular' - meaning its compatible with our human body.

• in reply toshaws9 years ago

So it'd unlikely I will have any kind of allergic reaction? That's my main fear. My husband read through leaflet and he said even the side effects aren't anything nasty at all so it seems a well tolerate medication.

Do you have to take it a while before or after other medication? I take mirtazapine for sleep and anxiety at 10pm and the pill loestrin for heavy periods at 6pm. Other than that it's vitamins and iron during the day.I hope to get off both the other drugs once settled and feeling better.

Thank you for your help.

shawsAdministrator• in reply to9 years ago

Take levo with a glass of water when you get out of bed and wait about an hour before eating.

When you are due for your next blood test - on that morning don't take levo until after your blood test which should be the earliest possible and don't eat either but you can drink water.

Eating lowers the TSH and you don't want that as doctor may wrongly adjust your dose.

Take levo after test.

• in reply toshaws9 years ago

I took it at 8am. Woohoo.

shawsAdministrator• in reply to9 years ago

Great. I bet your heart was beating fast before you took the plunge

• in reply toshaws9 years ago

Haha it was. So glad I've done the harder part now.

shawsAdministrator• in reply to9 years ago

second part of this link - read about 'female conditions'.

web.archive.org/web/2010103...

Iphoenix• in reply toshaws9 years ago

OMG that makes me feel that I have hypo. forever. I started with heavy periods at the age of 13 and until I took the pill was on for 10 days and off for 10 days. Again in my 30s I had to stop taking the pill due to hormonal imbalance (never diagnosed) and went right back to 10 days on/10 days off until I was allowed to have a hysterectomy in 2002!

shawsAdministrator• in reply toIphoenix9 years ago

I doubt doctors are aware that thyroid hormones affect every aspect of our metabolism and don't even know the most commonest of symptoms either.

Iphoenix• in reply toshaws9 years ago

Over the years I pushed and pushed to get help for my hormonal imbalance which started during my second pregnancy and I was told in a 9 month period that I had polycystic ovary syndrome, early menopause and free testosterone and 4 years later told I didn't have free testosterone, but because I had to stop taking the dianette pill to get rid of facial hair I was discharged, even though the reason I couldn't continue with the pill was because it literally wanted me to kill my husband and daughters. I didn't want to help myself but it was okay to commit murder. Luckily for him that endo has now retired because if I saw him again I would be tempted to act on what I felt 20 odd years ago but on a different person!

shawsAdministrator• in reply toIphoenix9 years ago

I'm not surprised that we have inbuilt anger due to unnecessary suffering and no knowledge from those we expect who should at least have an idea.

hypothyroidmom.com/pcos-and...

hormonesmatter.com/connecti...

greygoose• in reply to9 years ago

The heavy periods are more than likely down to your hypo. Stupid doc should have known that! Or, down to low iron, caused by being hypo.

Take your iron at least four hours away from Levo. And vitamins two hours away.

• in reply togreygoose9 years ago

I've had heavy periods since I started at almost 15 years old. Very heavy and very painful. Then when I was about 31 they got much heavier. I had scans and referred to gynaecology who weren't concerned as scans clear. I was told to try the pill as my ferritin just kept dropping. My ferritin got to about 18. I took the pill a year then had a really test for the ferritin and it was 8! That was 3 years ago so that proved even though my periods were light my ferritin was still dropping but no investigation were done. I asked for b12 to be checked but no they refused. Then in 2013 my gp tested my thyroid and my tsh was 4.9 (0.35-5.5) and ft411 (7-17) I was told I was fine. My anxiety was rife around that time too but it did coincide with my brother attempting to attack me and me ending up scared to leave my home it was the start of my anxiety disorder. So it was likely all due to the anxiety and stress of my brother being violent and my family resenting me for cutting him out. My grandmother had also passed. So for the last 3 years I've plodded on then last year hit by stress in the winter with my ill child ferling suicidal due to bullies, and from then on I've been anxious again and very ill with chronic fatigue and all the symptoms I've mentioned in my posts. My tsh has rocketed since January when it was 6. My gp still told me I was fine. He even tried to increase my medication I started 3 years ago after the situation with my brother. I refused as I want to wean off that once my thyroid is stable.

I took the thyroxine at 8am today. Proud of myself lol!

greygoose• in reply to9 years ago

Well done, you! That's great.

But, you know, you could have been suffering with your thyroid for a very long time without realising it. You really Don't know how long your TSH had been at 4.9, do you. It doesn't happen over-night.

Heavy periods can be caused by hypo, but can also be caused by low iron. It's the low iron that causes the heavy periods, not the heavy periods that cause the low iron.

But these things all tie up together, and it's practically impossible to unravel them in retrospect. Best to think of the future, and forget the past.

• in reply togreygoose9 years ago

Looking back I've had symptoms for a long time.

Now here is to better health and getting out of this awful chronic fatigue.

Thank you.

shawsAdministrator• in reply to9 years ago

Greygoose is right, our thyroid glands were probably failing gradually for years, so now it will take a little while to get back to a dose which makes us feel well and 'normal'

• in reply toshaws9 years ago

I am hoping me taking the combined pill loestrin 20 (lowest dose pill) won't have caused any of this. I'm on it for heavy periods.

shawsAdministrator• in reply to9 years ago

When your dose of thyroid hormones reach an optimum your heavy periods might cease.

I don't think it would have interfered with your thyroid gland and am not medically qualified.

Greenwall• in reply to9 years ago

Well done. It's a big step that I can identify with. Re iron. Spatone is supposed to be a gentler way of taking iron - ie without the constipation etc. boots.com/en/Spatone-100-Na...

• in reply toGreenwall9 years ago

I do take spatone twice a day but my numbers don't seem to rise much.

Thank you.

Justiina• in reply to9 years ago

May I ask has your haemoglobin been normal despite low ferritin?

I have relatively heavy periods , can manage with them but bleeding properly and I am denied to get my ferritin tested as my haemoglobin is high normal. I have learned body can compensate so ferritin could be low.

I can't get it tested privately at the moment so I have to wait until a new walk in lab opens up to get it done :/

• in reply toJustiina9 years ago

My HB has always been around 14-15. I think last test it was 15.8 and my GP said it was excellent. Weirdly even when my ferritin was 8 my haemoglobin was 14.

Justiina• in reply to9 years ago

Thanks! I am being told again and again that my ferritin can't be low.

Will continue to push to get that test :/

shawsAdministrator• in reply to9 years ago

I think when your doctor says 'hyperthyroid' I don't think he means Hyperthyroidism (which you don't have). I think he's used the word hyper in that some people if they take too much thyroid hormones get unpleasant symptoms but you'd miss the next dose.

The following is from ThyroidUK and look at the bottom of the middle column.

thyroiduk.org.uk/tuk/testin...

Before blood tests were introduced it was the patient's clinical symptoms which were the priority and they were prescribed Natural Dessicated Thyroid Hormones on a trial basis.

• in reply toshaws9 years ago

Thanks for your reply.

No he actually said to me and my husband with my ft4 being good at 15.7 (range 12-22) that taking thyroxine too early could push me the other way and make me hyperthyroid. It's what he has said all year and why he wouldnt treat. I've had to almost bully him this week into treating my latest results lol.

Thanks for the info. It all helps.

greygoose• in reply to9 years ago

Yes, well, he just doesn't know what he's talking about, does he. You must realise that by now!

• in reply togreygoose9 years ago

Lol. Yes!

shawsAdministrator• in reply to9 years ago

What surprises us that before being hypothyroid I'd believe all that the doctors said.

Nowadays after being left undiagnosed, unmedicated for more than 7 years, discharged from the A&E as 'probably viral with high cholesterol) when I thought I must be dying I don't trust them any more.

If you click on my name you can read my profile (history).

Many women get HRT prescribed but thyroid hormones run our whole body from top to toe.

• in reply toshaws9 years ago

Your story was very interesting to read. I couldn't find part 2. I clicked the link at the end of part one which didn't open.

I seem to know more than my gp and this is all new to me.

Iphoenix• in reply toshaws9 years ago

I couldn't find part 2 either.

Mouldyoledoll8 years ago

although your anti TPO antibodies are below the ref range, you could still have Hashis (in my opinion) I was tested a couple of times before given a diagnosis, and mine were 16 & 20, so I was told no hashis. (still felt dire), then last year I was tests again, and they had gone over range twice, EVERYTHING you have described symptom wise is Exactly what I get, I feel for you, I really do, its horrendous 😞

• in reply toMouldyoledoll8 years ago

Thank you so much. My gp even thinks I have hashimotos and is surprised I've tested negative twice.

I've even gluten free 5 months and I did read that can effect the results not sure how true that is.

I was tested for antibodies in January and March. Here were the results....

January 2016

Anti-Thyroidperoxidase abs 11 <34

Anti - Thyroglobulin abs <10.000 <115

March 2016 Blue Horizon

Anti-Thyroidperoxidase abs 10.7 <34

Anti - Thyroglobulin abs <10.000 <115

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