Is TSH fluctuation normal if you have Hashimoto's? Confused by latest bloods

[soulchick1]

Picked up blood results yesterday and I'm confused as some was not as expected:

Yesterday

TSH 1.79 (0.35-5)

FT4 13.3 (9-22)

FT3 4.6 (2.6-5.7)

TPO antibodies 11.4 (0-5.6 ku/L)

B12 not tested

I await thyroglobin (not sure on spelling) antibody test results - weren't back annoyingly.

Xmas 2013

TSH 4.17 (0.35-5)

FT4 14.5 (9-22)

FT3 Not tested

TPO Not tested

B12 308 (200-900)

I was expecting antibodies to be present as flagged as high here. But I'm extremely surprised at TSH never been this low as far back as I remember.

My question is: in Auto-Immune Thyroiditis/Hashimoto's can your TSH fluctuate? I think this is a dramatic fluctuation....

Made me think.... over the years (8-10 yrs I think I've been affected) I've been very up and down in terms of health -the worst symptoms always comes in what I describe as waves so that I can have periods of 3-6months where I'll be far worse than the previous and vice versa. When I'm not so bad I can lose weight, have more energy and enjoy life a bit more. When I'm more ill I pile on weight, become extremely tired, don't feel able to socialise and a host of other unpleasant symptoms (I ticked over 50 on thyroid uk hypothyroidism list).

So is it possible to even fluctuate between hypo and hyper type symptoms - I can get breathless, lose appetite, get palpitations, feel extremely cold or hot and go through times with low basal temps and then times where it seems a bit more normal. Matching this my menstrual cycle can be totally erratic when ill (last was 6 week cycle!) but when I'm more well still not regular but every 31-33 days. This said I overwhelmingly generally present with hypothyroid symptoms.

Btw I take nutri thyroid, thyr complex, adrenal extra, co q 10 and vit c everyday. Dr P said I was hashimoto's in 2006

I feel very confused.... Think I've taken in too much info as a newbie!!

Thoughts?

[HarryE]

Yes the antibodies can make your results fluctuate a lot. Your TPO antibodies are positive by a little bit. TG might be at a higher level. I only have TG antibodies. I think the testing for those takes longer, mine took two weeks to come back.

[soulchick1 in reply to HarryE]

Thanks! Yes I thought TPO was only a little raised. In 2006 using a different range it was above 1000 IU/ml, i.e. essentially off the chart! Considering how many ill spells I've had recently I was surprised it wasn't higher. Doc gave me a referral anyway. Have you had successful diagnosis based on TG alone?

[HarryE in reply to soulchick1]

Haha, you must be joking

Going down the self treat road after yesterday's hopeless appointment!

Maybe your antibodies have decreased as they have wreaked all their havoc and have nothing left to wreck?

my TGAb result was 1823

[soulchick1 in reply to HarryE]

Yes I thought maybe they were in decline if my thyroid was packing up. But then it's confusing considering the latest TSH. T4 is going down gradually - possible indicator?

Your antibodies seem ridiculously high, that would definitely indicate auto-immune thyroiditis. Maybe you can see a practitioner that is more sympathetic to these things? After so many years I am going down this route as well and taking financial hit again - I don't want to end up having to work less again, (something I've been considering) especially as I'm on for promotion. Hopefully speculate to accumulate so to speak. Shouldn't be like this.....

[Moggie]

The antibodies that are attacking your thyroid (Hashimotos) do not attack constantly but in fits and starts so when an attack is in progress you will need every bit of thyroxine you are taking but when the attack stops then the thyroxine you are taking may be a little too much.

There is no way to regulate this but your TSH will fluctuate and, depending if you have a blood tests when an attack is happening, it could show as being higher. After every attack you lose a little bit more of your thyroid function until you have no thyroid function left and then you will be on a more stable level.

Hope this helps

Moggie x

[soulchick1 in reply to Moggie]

Thanks Moggie, response much appreciated.

In your opinion could this be why the t4 is gradually decreasing? 18 (9-22) in 2006 but with antibodies extremely high, now t4 is 13 but antibodies are less.

It's hard to know how to address this when I see the endo and because I supplement with natural thyroid glandular and adrenal supplementation; the results are better than they would be if not. If I had left it in 2006 I think I would not be able to get out of bed by now. As it is often I feel like that even now.

Plus I'm only 29 now and it's so frustrating that I can't go out with my friends that much and frequently have to cancel social arrangements. This year I cancelled my own birthday and NYE I feel like I'm drunk sometimes with a dragging down sensation in my head and dizziness, even though I haven't touched alcohol for 3 months because of this.

Sorry for the mini rant! I'm feeling very sorry for myself today as I have a gig tonight (I'm a singer although main job is teaching) and have had a swollen tongue for 3 weeks. Never mind singing I can't even be bothered to get off the sofa!

Soul Chick

[Moggie]

Sounds like you are in the middle of an attack at the moment.

Just want to make sure that you are keeping all your nutri stuff (and any other supplements you are taking) at least four hours away from your thyroid meds - because if not the raise in TSH, and the drop in FT4, could be down to an absorption issue. How long have you been taking all your supplements and have you noticed a difference in how you feel since taking them.

Every time your TSH rises then your FT4 will fall as your TSH is telling you that you do not have enough thyroid hormone in your body, so if you don't have enough then your FT4 and FT3 will fall making you feel as you describe.

Never really looked into the antibody side of things but I do know that it is a good indicator of the inflammation level of your body. Have you stopped eating gluten at all?

Moggie x

[soulchick1 in reply to Moggie]

Take all adrenal supplementation in morning thyroid stuff at night (partly due to not liking to take tablets all at once)!

Have done wheat free (alongside lowering diary and sugar) when I was younger, I lost a lot of weight, however I became very ill and endo actually said I harmed my thyroid my changing my diet too much i.e. stressing with not enough calories. Is gluten free good for those with thyroid problems or is it just a case of better diet is better for health in general?

Thanks for your comments

Soul Chick

[Moggie in reply to soulchick1]

Have a look at this

healthunlocked.com/thyroidu....

Moggie x

[crimple]

Hashi's is definitely a roller coaster. I drew a graph showed my TSH were up and down each time I was tested. I had a scan that showed severe atrophy. I was wheat free but am now going gluten free. Read the Wahl's protocol or the paleo solution by robb wolf. Hashi's is an auto immune condition. The local endo wasn't concerned about my antibodies, just slightly increased my levo!

[soulchick1 in reply to crimple]

Thanks for the reply Crimple. Atrophy - does this mean the thyroid is 'wasting away'. I'm assuming this is what hashi's essentially is and that the meds are supposed to try and counter this. Although I don't think they are anymore - I'm looking to make a change and have a referral to an endo plus I've sought out a specialist recommended on this site.

I am concerned that as I've shied away from docs in the past they won't really understand the 'true' medical history. However, I do have several blood tests showing how many antibodies I had previously and how many I have now. I'm sure my thyroid has been massively depleted by now.

How are you finding gluten free? Is it particularly good for auto-immune diseases or just for general health? It may sound ridiculous but when I'm ill nice food is one of the main pleasures you can continue when you don't feel like going out...

Soul Chick

[crimple in reply to soulchick1]

Hi soulchick, yes my thyroid has wasted away because of the thyroid antibody attacks. I only ever had a TPO test in 2007 when I first was diagnosed as hypo and the reading was very low.

This site has been a godsend because reading things on here alerted me it was probably antibodies that were making me feel ill last year. I asked my GP for the test in Dec and it showed high TPO levels.

I was tested for food intolerance in 1999 and they told me no wheat, chicken or eggs.(I carried on eating rye, barley and oats) Now I am trying to go completely gluten free and also dairy free, as per the books I mentioned above. For 30 days the diet is pretty strict but then you can try to reintroduce some of the foods such as dairy, but absolutely no gluten. The body cannot recognise the difference between gluten and something in your thyroid. Gluten is bad news for most folks who have auto immune diseases such as Hashi's, Crohn's etc.

I feel OK on levo but I still have a number of issues. If going gluten free and ensuring that there is nothing else that I cannot tolerate (apart from NHS LOL) doesn't sort me I might go for the genetic test which will show if I am more likely to have problems with t4 and conversion to t3.

Going gluten free is a lot easier than it used to be, more food manufacturers cater for it and also more restaurants are aware.

The more I learn on this site the more I realise how we thyroidies are fobbed off by the medics. "Take a pill and everything will be alright" Well I am one of those awkward folk who ask what is the reason for taking the pill? Is it just to cover up the symptoms or will it cure the cause of the disease? What was the cause of my disease? not just genetics but also environmental, food, other illnesses in my life. I would love to know if the incidence of thyroid problems has increased much since Hiroshima and Chernobyl?!!

[soulchick1 in reply to crimple]

I may well investigate how this diet could work for me. Once I've had my appointments anyway.

It's interesting you speak about the cause or the 'why' we have these things. My family is definitely predisposed to hypothyroid problems on both sides. However 2 medical things happened when I was younger. 1. I had a bad reaction to the measles booster injection at 9 and my mum says from that day she watched a healthy girl get ill bit by bit. 2. At 16 I had glandular fever and this is when I think the antibodies may have turned on the thyroid, something Dr P discusses in his book. Between the 3 I think it was unfortunately destiny for me. But I do know I'm not a fan of injections like the MMR particularly

[crimple in reply to soulchick1]

Hypo is rampant on my Dad's side, I had very bad mumps as a child, tested +ve for glandular fever in my teens and had two serious instances of gut problems. Came back from a holiday as a teenager with some nasty persistent stomach bug and in my thirties suffered a very bad dose of gastric flu, followed by pneumonia. Think that was when the "leaky gut" problems started which led to food intolerance and then thyroid antibodies. So far my three sisters, all younger seem to be ok thyroid wise. both daughters wheat intolerant and grand daughter coeliac!! Will post how I get on with paleo once I have worked out what I can eat!!

[soulchick1 in reply to crimple]

very interesting. i certainly think there's a glandular fever/thyroid connection as it's also an auto-immune disease so hashi's seems like it could easily start as a result of this.

[HarryE in reply to soulchick1]

I think I had glandular fever too.

[soulchick1]

Thanks for the reply. That's so interesting, I can often have flu or cold like symptoms. Not just poot resistance or recovery but in themselves e.g. random sneezing and sore throats. If feeling under par I often don't make the whole of an evening or day out. Have driven boyfriends mad with this by leaving dinners early in the past!

Soul Chick