Hashimotos 12 plus years plus… just got MGUS diagnosis

[KB3101]

I hope you don’t mind me asking, but I follow on here as I have Hashimotos for 12 plus years and been quite poorly this year so additional bloods finally run and just told I have MGUS - still to see consultant but just wondering if anyone else has Hashimotos and MGUS? I’m a bit in shock so trying to research as much as possible before consultant appt next week. X

[Regenallotment Ambassador]

Hello,

There have been a few mentions of MGUS over the years. If you type MGUS into the ‘search community’ box above you can find them.

Good luck with finding the info you need 🤗

[KB3101 in reply to Regenallotment]

thank you x

[McPammy]

if they’re diagnosing MGUS I wild certainly re check your thyroid bloods TSH, T4 and importantly T3. The symptoms of MGUS are very similar to under or over medication of thyroxine. I was diagnosed with all sorts when infact it was my thyroid medication that was wrong all along. NHS can be so wasteful sometimes sending you down alleys you never needed to go. Once my thyroid levels were sorted I now have no symptoms or issues. Please recheck your bloods. The aim is to get your TSH around 1.00 and t4 and t3 levels within range.

[KB3101 in reply to McPammy]

Hi McPammy, yes I’ve had constant TSH/T3/T4 bloods this year, after a London Hormone clinic put me on Novothyral 75 in Nov 2023 (I was just on Levo for over 10yrs) became over medicated so they changed to EveryOTHER day for 3 mths! My TSH ended up 15.4. Anyway they then put me back to everyday and increased T3 after 2 days I was in awful, horrendous anxiety state- ended up in hospital with AF. My GP and I have Thyroid levels more stable now just on Levo and I manage my diet with no Dairy/Gluten/Soya. (TSH at 1.4 couple weeks ago). My issue has been with all the routine bloods they have been running my white and red blood cells have been abnormal, I have had 3 infections that have turned to cellulitis this year and in September I got pneumonia which knocked me out for weeks, I’m now getting over a cold, I’ve also been getting night sweats for months and been getting pins and needles in hands/arms (not menopause as they stopped about 3 yrs ago). Lethargy and aching too but as you say can be hard to tell if that’s Hashi. I spoke to a MGUS nurse yesterday, she said I have MGUS (G) as G paraprotein found and explained what tests might be carried out next. Apparently MGUS doesn’t really have symptoms, but lows your immune system? I’m obviously very new to all this so trying to understand as much as possible, I have been told there is no treatment but bloods to be monitored every 3-6mths to make sure no progression to myeloma. It’s hard when you already have Hashimotos isn’t it as this in itself is a challenge to try keep in check. It’s the infections this year that has been a massive challenge. Sorry for all my rambling above and thank you for listening… this forum is such a great help. Can feel quite lonely and scary can’t it. Have a good day x

[McPammy in reply to KB3101]

Sounds like you’ve been quite up and down with your thyroid levels due to being advised to alter your thyroid medication and doses. TSH of 1.4 is good so try and keep it there now meaning T4 and T3 within their ranges. Sorry to read you’ve had pneumonia. Since I started T3 combined with my usual T4 I’ve noticed I have low white cells and on occasions low neutrophils too ( below range). The only other time I can see on my NHS record when they were low was some years previously when my GP increased my levothyroxine dose and I went over medicated feeling awful. So, I’m putting down my low white and neutrophils down to high thyroxine whether that t4 or t3. I too have had more infections than I’ve ever had since starting T3 and low white cells. I haven’t really followed this up with any Dr as I don’t want to lose my T3. Any excuse and they might pull my NHS t3 prescription. I couldn’t live without T3 so I just live with picking up infections and trying to deal with them. I’ve just got over Covid after picking it up in Italy recently. The last 3 holidays I’ve come home with Covid and get infections at home too. Never had so many. It is to do with abnormally low white cells and neutrophils as they are first line defence. I use hand sanitizers a lot. And next time I’m on a plane I will definitely be wearing a mask both ways.

Hope you get sorted soon and keep your levels steady.

[KB3101 in reply to McPammy]

Sorry to hear you are suffering so much. It was off the back of my infections and continual low bloods that they ran specialists bloods:

Paraprotein profile and Urine protein and serum protein electrophoresis and neutropenia - light chains.

Good luck and I hope the infections reduce x

[SlowDragon Administrator in reply to KB3101]

Just testing TSH is inadequate

What are Ft4 and Ft3

ESSENTIAL to test B12, folate, ferritin and vitamin D

Low B vitamins frequently causes pins and needles

Night sweats strongly linked to low B12

Low white blood cells common with Hashimoto’s

As you are dairy free you should be on lactose free levothyroxine

Which brand Levo are you currently taking and what dose

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[KB3101 in reply to SlowDragon]

Thank you Slow Dragon and McPammy, it’s so good to know I’m speaking to people that know and understand. Yes bloods always taken first thing in morning And no Levo before 👍

T3. 2.03 (2.02 - 4.43)

T4. 1.10 (0.93 - 1.71)

Just for info All my red flagged bloods were:

Leukocytes 2.61

Neutrophil % 39.60

Neutrophil # 1.03

Lymphocyte % 50.90

Eosinophil 0.30

I take Vit D 1000 everyday, Vit B complex, Vit C and Zinc plus Probiotics daily.

My Vit B levels all very good, same for Vit D, zinc is also good, Feritin, etc etc all good. I get tested privately through One Test in Tun/Wells as NHS is hit and miss if lab will actually do them. I felt improvement with Hashi symptoms when I started taking supplements a couple years back.

I’ve sometimes had slight tingling in hands when levels are out but nothing like the strong pins and needles lately which go up my arms (Thyroid levels are stable).

The other thing I suffer constantly from is mouth ulcers and sore inflammed mouth so have to avoid salty crisps, chilli and acidic fruit as this can make things flare up….. I used to find alcohol and lots of sugary food did too so haven’t had alcohol for couple years now and sweets are a thing of the past 😕. Also slowly lost weight not a lot but can’t put on weight I’m 48kg.

X

[SlowDragon Administrator in reply to KB3101]

Free T4 (fT4) 1.10 pmol/L (.93 - 1.71) 

Ft4 only 21.8% through range

Ft3 BELOW RANGE

So very inadequate dose

How much levothyroxine are you taking

Which brand

Most people when adequately treated on just levothyroxine will have Ft4 at least 60-70% through range……and Ft3 at least 50-60% through range

[KB3101 in reply to SlowDragon]

I’ve added what I have but GP ones I’ve been told are all good but I dont have copies as waiting for NHS app to be added on. Perhaps I need to increase Levothyroxine then? I’m on Levo 75 (Teva UK)

[SlowDragon Administrator in reply to KB3101]

but GP ones I’ve been told are all good but I dont have copies

GP would say anything within range is normal

Eg B12 range is 180-780 …..GP would say B12 at 185 was “fine”

We must have optimal vitamin levels on levothyroxine

Vitamin D at least over 80nmol

Serum B12 at least over 500

folate toward top of range

Ferritin at least over 70

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

[SlowDragon Administrator in reply to KB3101]

My Vit B levels all very good, same for Vit D, zinc is also good, Feritin, etc etc all good

Please add actual results and ranges

[SlowDragon Administrator]

Are you vegetarian or vegan

what vitamin supplements are you taking

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

[t3rr]

Hi, yes I have MGUS, and have had it for 3 or more years, this summer my gamma and kappa levels rose lot, and as my brother had myeloma, I am waiting for an appointment with the local hospital haematology department. Also have been hypothyroid for over 25 years.

[KB3101 in reply to t3rr]

Hi, thank you for your message. I hope your appointment with the consultant goes OK and your MGUS hadn’t progressed. I wish you luck.

I have my appointment next week, I hadn’t even heard of MGUS last week so I’m hoping to be reassured. I was wondering if there are symptoms that you feel overlap with Thyroid/MGUS and if you feel worse since being diagnosed as I’ve read it doesn’t have symptoms

[Tina_Maria]

It looks like your FT4 is very low in range and your T3 below the range, so you would urgently need an increase in your thyroid hormones.

Low thyroid hormones can affect immunity and our immune system, hence we lose the ability to fight off infections. MGUS is a condition where some plasma cells produce abnormal antibodies called paraproteins. These antibodies don't work as well as normal antibodies and aren't very good at fighting off infection.

There has been a recent publication outlying the interaction between thyroid hormones and the immune system.

Cells of both, the innate and adaptive immune systems, express a variety of components involved in local thyroid hormone action and are sensitive to thyroid hormones affecting immune cell function.

Which means that if you are not receiving adequate amounts of thyroid hormones, you cannot produce an adequate immune response, including antibodies to fight off infections. I would even go so far as to speculate, that your MGUS is a consequence of your low thyroid hormones and the inability of your plasma cells to produce the necessary antibodies.

I would insist on an increase in medication and then retest after 6-8 weeks. You may need further increases to get your T4 and T3 around at least 60% through the range.

[KB3101 in reply to Tina_Maria]

Thank you so much. Looks like I will have to do this myself as I’m just told my levels are fine. How much extra Levo do you think I should take either daily or every other day. I only have 75 tablets so thinking I’ll have to break in half, if I take an additional half tablet every other day to start do you think?

[Tina_Maria in reply to KB3101]

I think you should get back to your doctors and tell them that you are feeling very unwell on this dose despite them saying it is in range (and the T3 is just about scraping the bottom of the range, you can point this out). Consider putting in a complaint with the practice if the doctor is unwilling to listen or try to to change to a doctor or practice that is a bit more sympathetic (if you can).

In addition, the prescribing guidelines for levothyroxine clearly say, that a normal replacement dose for levothyroxine is 1.6 kg of levothyroxine per kg of body weight. So a person weighing 63kg would need around 100 mcg of levothyroxine per day.

cks.nice.org.uk/topics/hypo...

They cannot ignore this guidance and as a patient being symptomatic you have a right to try an increase in levothyroxine as per the guidance in the first instance. You may need further increases but it is important to make a start. As a very last resort, you could try to self-medicate, but this will be then difficult later on when they do follow up blood tests and your levels are higher on a perceived lower dose....

Try to go through the official channel in the first instance and if you put in a complaint, they might be more willing to listen to you and you can get where you need to be. I know it is difficult, especially when you are not feeling well and worried about other diagnoses as well, but one step at a time. You can do it!

[KB3101 in reply to Tina_Maria]

Hi thank you so much. I weigh 48kg. I can’t get Dr appt and the Endocrinologist who I was referred to in August ( after London Hormone clinics complete negligence) won’t see me until February and they won’t test T3 or T4. This is so hard.

[Tina_Maria in reply to KB3101]

I just read a bit more in your profile. Are you still taking the T3? You were on a combination treatment before and then had levothyroxine and separate doses of T3. Is that still the case?

I think you would need an increase in levothyroxine (you could try 100 mcg and 75 mcg in the first instance) and very likely you will need an addition of T3 as well, especially since your T3 is so low and this is causing you all those problems.

[KB3101 in reply to Tina_Maria]

Hi, im just on 75 Levo now. I’m terrified of going anywhere near T3 after the awful time I had, I was in a terrible mental state of extreme anxiety and AF. Even when I came off it took weeks for things to calm down. I will never go near that private clinic again so I’m under NHS GP and Guys & St Thomas Endocrinologist - my GP has been very good, she has been honest and not pretended she knows fully about Hashimotos and searched for apparently the best place on NHS for me to go…. Unfortunately the Endocrinologist refuses to do T3 or T4 which is ridiculous. I’d welcome recommendations in South East /London but I realise we can’t do this on here which I totally understand. I’m wondering then if I slit pill in 4 pieces and do this as an extra every other day as of tomorrow (so would mean 75 one day then approx 94 next day. I can run private bloods in 6 weeks. I might see if for time being the Haematologist will run thyroid too next week 🤔. As always I am so extremely grateful for all your comments and advice and I had no idea my Thyroid bloods were so bad when they say in range. I should know this by now! Thank you all x

[Tina_Maria in reply to KB3101]

You definitely have room to increase your dose of levothyroxine, if you do not want to try T3 again, having said that, as you are very low in weight, you may need to start very slowly and very slowly build up to it (12.5 mcg increment if you won't tolerate a bigger dose), although it will take longer for your levels to come up.

Then test again after 6-8 weeks and see where you are. It will be a longer process until you build yourself up again. However, if your T3 levels won't increase sufficiently, you may need to revisit T3 again. I just think because of your petite build, you had too much T3 too soon and hence you had all these nasty reactions. You may need to start very gently if you revisit this again, see how you are getting on and very slowly build up. I think it can be done gently, so don't think you have to give up on T3 completely. There are very knowledgeable people here regarding T3 and I am sure they will be happy to guide you. All the best!

[KB3101 in reply to Tina_Maria]

Thank you so much x