Feeling rough and GP won't test my thyroid - stuck

I was officially diagnosed Hashimoto's by my Endo 2 weeks ago. I'm on 150mcg Levothyroxine, 1000mcg Vitamin B12, 2 Spatone sachets and 3000IU Vitamin D per day.

All thyroid function test results from Nov 2011 to Jan 2014 for those who haven't seen:

Nov 2011

TSH - 5.2 (0.27-4.2)

FT4 - 16.8 (12-22)

Ferritin - 29 (30-400)

(No treatment started)

Feb 2012

TSH - 2.2 (0.27-4.2)

Jan 2013

Anti-TPO antibodies - 84,000 (<34)

TSH - 0.69 (0.27-4.2)

May 2013

TSH - 22 (0.27-4.2)

FT4 - 10.9 (12-22)

(Levo started at 25mcg for 2 weeks, 50mcg for 2 weeks and 75mcg for 3 months onwards)

Aug 2013

TSH - 4 (0.27-4.2)

Ferritin - 15 (30-400)

(Levo increased to 125mcg and was put on Ferrous Fumerate 210mg, which I changed to Spatone)

Nov 2013

TSH - 4.3 (0.27-4.2)

FT4 - 15.3 (12-22)

(Levo increased to 150mcg)

Dec 2013

Anti-TPO - 41,000 (<34)

TSH - 4.6 (0.27-4.2)

FT4 - 15.6 (12-22)

Ferritin - 22 (30-400)

Vitamin D - 43.6 (>75)

Vitamin B12 - 363 (180-900)

(Levo not increased, started Vitamin D and Vitamin B12 supplements and have gone gluten-free)

Jan 2014

TSH - 2.7 (0.27-4.2)

Previous symptoms were:

* Fatigue

* Constipation (every day and in the morning)

* Joint pains

* Heavy/early/late/short periods

* Feeling lethargic

* Depression

* Anxiety

* Weight loss

* Mood swings

Symptoms are now:

* Fatigue (to the point of sleeping in front of a full-blast TV and spending up to 17 hours asleep in bed)

* Constipation (not every day but every other day)

* Joint pains

* Heavy periods but contain more bright blood than the previous dark brown/black blood.

* Feeling lethargic

* Depression

* Anxiety

* Weight loss

* Mood swings

* Panic attacks

* Palpitations

* Falling over

* Heavy feeling in legs

* Drunk feeling

* Nausea

* Lightheadedness/dizziness/fogginess/fuzziness

* Previous chest pain (comes and goes and is sharp)

The ACTH my Endo has ordered has come back with nothing abnormal and Coeliac screen and Rheumatoid Factor screen have also been done by her. I'm currently waiting on the delivery of a private adrenal stress test and looking at problems relating to mold/damp.

I'm currently measuring my blood pressure, heart rate and basal body temperature for two weeks as well.

The fatigue and last 5 symptoms listed have started tonight and I'm sure my doctor will not test my thyroid function due to the one at the start of this month coming back normal. Can I push for another one or is it really not worth it? How long should I be waiting for a retest to be done? I feel like I'm going to be waiting ages for it.

Thanks

Jo xxx

[Clutter]

Jo,

You need a couple of months at least to feel the benefit of supplementing and going g-f.

Didn't you request an increase in meds when you saw your GP on Monday? GP can order TFTs every couple of weeks if they feel there is a need, usually to determine whether an increase or decrease in dose is appropriate.

[Hidden in reply to Clutter]

Hi Clutter

Yes, I did request an increase in meds but the GP refused to go ahead with it.

Funnily enough the latest symptoms go away after eating something sugary but I'm not diabetic.

Thanks

Jo xxx

[Jow11 in reply to Hidden]

Hi Jo, the latest symptoms that you mention that go away when you eat something sugary sound like hypoglycaemia. I had very similar symptoms, a holistic dr I saw recommended going on a totally sugar free diet, eating frequent protein rich meals. This regimen really helped with the symptoms but I had to be very strict. I also took 500 mcg chromium picolinate a day as it is supposed to help with blood sugar problems.

In the end after taking hydrocortisone for a while I was able to stop the chromium, also I am able to tolerate sugar better and rarely get hypoglycaemia symptoms even though I no longer stick to the diet.

I was told by a dr that insufficient cortisol may lead to hypoglycaemia.

Hope this helps.

[Hidden in reply to Jow11]

Hi Jow11, thanks for your reply - you've helped lots!

Should I tell my GP about this? This has only happened once and I seem to have kept the symptoms away by eating polo mints. Just one note: I'm not diabetic which makes this confusing.

When I had my cortisol tested last week during the ACTH test, my baseline cortisol was really high!

Thanks

Jo xxx

[Jow11 in reply to Hidden]

Hi, your baseline cortisol could have been high if you were really stressed about the test. The saliva test you're doing will hopefully give you a better picture.

You could tell your GP about this but I'm not sure if he'd be helpful. When I told mine, he didn't take it seriously and just told me to have a Mars bar when I got hypoglycaemia symptoms.

It was a holistic doctor who recommended the diet, the supplements and who prescribed cortisol. I hadn't had an ACTH test only the saliva ones.

I had also thought that hypoglycaemia was only associated with diabetes. I am not diabetic, either. It turns out it also happens with low cortisol.

[Hidden in reply to Jow11]

Hi Jow11, thanks for your reply.

When my GP went through my ACTH results with me she didn't give me much information as she knew very little about the test. She had the basic knowledge of what it was for but she couldn't give me any guidance on what the numbers meant. All she knew was that the cortisol had to double from the baseline level.

Jo xxx

[yenool]

IMO there is no point having another TFT done IF all they are going to test is TSH again. Unless you have changed medications the TSH is unlikely to have changed in 2/3 weeks really.

It would be more to the point if they would test your FT4 and FT3 levels. Back in Dec 2013 your T4 wasn't exactly brilliant and Ferritin, D and B12 could all be higher for optimal function. - Is the GP going to retest those at some point to see if the supplementation is bringing the levels back up?

[Hidden in reply to yenool]

Hi Yenool, thanks for your comment.

GP has not mentioned anything to me about having the Ferritin, Vitamin D and B12 to be retested.

Jo xxx

[shaws]

I have just read this article and wondered if it would be helpful for you.

stopthethyroidmadness.com/s...

[Hidden in reply to shaws]

Thanks for the link Shaws.

Jo xxx

[Jackie]

Hi It takes about a year for thyroid to become stable. However, during that time until levels right,,you need TSH, T4 and free T3 done every 6 weeks with adjustments in T3 and T4. only the blood rest for FT3 will really show you that You may need T3 and T4 ( levo) on a script.. b12 needs to be a lot higher. Vit D should only be taken after a calcium test ( corrected). if top of range not safe, if very low in range or lower then with calcium NICE.This should be under the Endo. retest after 4 months, then about 6 monthly for both.If GP will not test for FT3, often the NHS Labs refuse,then, can you pay for Blue Horizon, on line. Main

site there is a good finger prick test, called that but a phial of blood ,so fine. Quote TUK10. The lab mostly used by all the private hospitals ( expensive) so well known to docs if you wish to show them. For this reason I have all my thyroid tests there for my Endo or extra if I need them. i have the 3 done together which is best i feel it is worth the annoying cost for the safety.You should also have a diabetes test . annually. It is hormonal and autoimmune. iron/ferritin also takes about 4 months, then taken usually for life.

Vest wishes,

Jackie.

[Hidden in reply to Jackie]

Hi Jackie, thanks for your comment and your help.

So in an ideal world, say for example my thyroid function test comes back normal -- my GP should be testing my thyroid functione every 6 weeks? It's been 3 weeks now so should I be looking to request another blood test for 19-20th February?

I was not tested for calcium before being prescribed Vitamin D supplements.

I might look into Blue Horizon again. I have already ordered an adrenal stress test which has come to me today.

Diabetes has already been screened, sorry. I had an HbA1c (I think that's right!) which was negative. Blood glucose at 4.9 mmol/L.

Jo xxx

[Jackie in reply to Hidden]

Hi GP should test every 6 weeks if not on the right level. usual to keep adjusting the drugs at first and may be giving some T3 too, if blood for FT3 low in range.A lot of docs do not know about the calcium which is an electrolyte. D usually makes it go up, if very low, calcium needed too, NICE. Calcium as an electrolyte must always be in range. if calcium starts going over, D must be stopped.A lot of ignorance about D. really important

Your Glucose is in range but quite high, I would try and have the Diabetic diet, better for thyroid any way, not too bad either.

Sad to say but there is only one test any use for Adrenal, according to my Endo24 hours urine collection cortisone, on a script for midnight and a blood test 9am. If her patients have any others , they have to have another one done, I agree actually too.

I hope tterrible problems husband broke my PC.

[Hidden in reply to Jackie]

Hi Jackie, thanks for your reply.

I looked into Genova and I couldn't seem to locate the 24hr urine test, only the saliva one. I've taken the gel pack out of the packaging and put it into the freezer so I guess I now cannot return it.

My TSH was in range last time so I doubt my GP will test it again until it's next due - and I don't know when that will be! Is that usually far away?

If it is far away I'll look into the Blue Horizon test.

Jo xxx

[Jackie in reply to Hidden]

Hi Jo, You can only get the test for Adrenal glands I describe through a doctor as you have to have the cortisone prescribed, also the blood test exactly 9am the next day. A lot of GP`s do a blood test but that is useless to My Endo will only accept this one as she feels, and I agree dangerous to treat with cortisone if not really needed. The treatment for low Adrenal glands. Also they often improve once thyroid is OK. Mine did, although still little low. I cannot ever take cortisone because of my heart. if a less fussy doc, and I was given it, told it could kill me.

.

My Endo and I do prefer Blue Horizon as well known lab and well tested, generally accepted by docs. for the blood. test, even the finger prick is OK, as really a phial, not really a prick.

Jackie

[Hidden in reply to Jackie]

Hi Jackie, thanks for your reply.

Is this adrenal test something an NHS doctor would order? I'm NHS registered I'm afraid.

Jo xxx

[Jackie in reply to Hidden]

Hi Jo They should,if asked, especially if Endo is keen. It can be GP.Otherwise may be your GP will refer you for it to local private hospital ( shop around) just for the test, they definitely can do that. The urine collection is £50 and the cortisone would be from the GP. I do not see why the GP could not do the 9am blood, but not sure how that would work.,with the combination of results. You can have the blood also done at Spire etc but puts the cost up. it is definitely available through the NHS but gP may not have heard of it. Not new been going for ages. I had my first one many years ago

GP`s can use any private hospital for tests, if you pay. Even a note on headed paper from them is enough, must be their signature, but most have the correct test form at their surgery. Alternatively arrange it with a private hospital, get their form, ask them to fill it in correctly and the GP then to sign it.

This is commonly done.

Jackie

[scrummeenut]

Jo,

I sympathise..............I was diagnosed with AutoImmune thyroiditis last summer and have worked hard to stay off meds. Fatigue was an issue regularly going to sleep in the afternoon. Also severe constipation......not sure if this may help but I turned gluten free without much success. What really helped was following a strict paleo diet and supplementing high dose Bit vits (100mg) amongst others. I was suffering so much with my gut I carried out a CDSA and saw I had low beneficial bacteria, intestinal permeability (separate IP test) and a few nasty pathogenic bacteria....I think this all contributed to the thyroid issue so I dedcided to address my gut issue. I also had had some amalgams removed but didn't put the two things together for ages. I ended up taking lots of chlorella/spirulina to help combat the toxicity.......not sure if this is helpful but thinking about what may have caused the thyroid issue may help in rectifying it.......cheers

[Hidden in reply to scrummeenut]

Hi scrummeenut! Thanks for your reply and your help.

Yes, I had an amalgram removed during root canal therapy but I didn't relate that to the thyroid even though it was years ago.

I'll look into the chlorella and spirulina if they're affordable enough as I'm unemployed. Thank you for your advice.

Jo xxx

[helvella]

Re your ACTH test, maybe you would find this interesting:

ncbi.nlm.nih.gov/pmc/articl...

Rod

[Hidden in reply to helvella]

Hi Rod, thanks for the link - most interesting indeed.

One thing I was wondering is, would the 21-hydroxylase antibody be usually detected in a typical autoimmune profile as ordered by the GP? There is no mention of this in my latest results printout so I can only assume it is not something commonly looked for.

I'm wondering if this would account for the high cortisol reading at baseline.

Thanks

Jo xxx

[helvella in reply to Hidden]

I am sorry Jo, I do not know. Never been involved with anything other than single tests.

Maybe the introductory part of this link says something useful?

pathology.bsuh.nhs.uk/Patho...

Rod

[Hidden in reply to helvella]

Hi Rod, this helps so thanks for the link

I was only tested for Anti-Nuclear Antibodies and the Tissue-Specific Antibodies. The Anti-Nuclear Antibodies came back positive and the Tissue-Specific ones were negative, however on the report with my results there was no mention of the Anti-Neutrophil Cytoplasmic Antibody, Cardiolipin or Specialist Antibody screens. So I presume these weren't screened for.

Jo xxx

[bantam12 in reply to Hidden]

I can't remember your test results but this may help you

Interpreting results of the short Synacthen® test[3]

If initial cortisol is >140 nmol/L and second cortisol is >400-500 nmol/L, this excludes Addison's disease. The test can be performed at any time of day, as it is the post-stimulation increase that is diagnostic and this occurs irrespective of any physiological variation.

[Hidden in reply to bantam12]

Hi Hypohen, thanks for your reply.

Baseline Cortisol was 622 nmol/L.

30 minutes after ACTH - 910 nmol/L

60 minutes after ACTH - 985 nmol/L

Jo xxx

[Heartless16]

Hi Jo,

I would highly encourage you to check out Dysautonomia. It's very unheard of but everything you have described is so closely linked to what I've been suffering with for the last 12 years. Hashimotos is also very common in those with Dysautonomia. Feel free to email me [e-mail] if you'd like more info! All the best, amy